A literature review of the social and psychological needs of ovarian cancer survivors
Abstract
Objective
To identify and comprehensively present the psychosocial needs of ovarian cancer (OvCa) survivors, including young survivors <45 years of age.
Methods
A literature review was conducted using keywords specific to psychosocial health and OvCa survivorship to identify peer-reviewed, original research articles published in English between January 2000 and December 2010; 28 articles were identified as relevant. Articles were abstracted and results categorized according to six psychosocial domains: quality of life (QoL), social support and relationships, self-image and sexual functioning, psychological distress and functioning, fear of death/recurrence, and personal growth and coping. Findings unique to young survivors are presented when applicable. Psychosocial measurement tools used in relevant studies are also presented.
Results
Physical complications and side effec ts have significant impact on OvCa survivors' psychosocial health. Access to social support services and relational support is critical, as feelings of isolation are common. Survivors report low levels of sexual activity and satisfaction, potentially causing strain on personal relationships, and survivors experience high levels of distress, depression, and anxiety. However, QoL can improve after diagnosis for some OvCa survivors, many of whom report spiritual growth and strengthened personal relationships. Younger survivors are likely to have greater distress and lower QoL compared with older survivors.
Conclusions
OvCa is the deadliest of all gynecologic cancers, greatly impacting the psychosocial health of survivors. Increased awareness of psychosocial health among OvCa survivors themselves, their social support system, and their health care providers is necessary to adequately address their unique needs. Published 2013. This article is a U.S. Government work and is in the public domain in the USA.
Introduction
Ovarian cancer (OvCa) is the deadliest of all gynecologic cancers; in 2008, more women died from OvCa than from all other gynecologic cancers combined. Each year in the United States, approximately 21,200 women are diagnosed with OvCa (2200 < 45 years of age), and 14,300 die from the disease (470 < 45 years of age) 1. There are relatively few OvCa survivors, defined as women living with a history of OvCa 2, compared with other cancer survivors 3 primarily because there is no recommended screening test 4, 5 causing late-stage diagnosis 6 and high risk of recurrence 3. However, the population of cancer survivors in the United States is growing, both in number and as a percentage of the population, with the majority being female, and those persons 65 years of age or older 7. The estimated 5-year relative survival for women diagnosed with OvCa in 2008 was 44.0%, an increase from 36.1% for those diagnosed between 1975 to 1977 6.
Due in part to the high mortality and often advanced stage of disease upon diagnosis, OvCa can have a strong psychological impact on the survivor, yet psychological support may be secondary to medical intervention 8. A growing cancer survivor population and the associated psychological and social (psychosocial) impact therefore reinforces the need to address the effects of OvCa on survivors' psychosocial health and well-being 7. Identifying risk factors and needs associated with poor psychosocial health is important to developing and appropriately targeting interventions 9-13; timely and effective translation of research to practice is paramount in supporting cancer survivors 7, 14-16.
Studies have identified many of the psychosocial burdens and needs faced by OvCa survivors. However, because of the complexity and myriad of constructs associated with psychosocial health, many studies may examine only one or two common constructs, such as quality of life (QoL) or social support. To comprehensively identify and synthesize published work on the psychosocial needs of OvCa survivors, we conducted a literature review on OvCa survivor's psychosocial health relating to QoL, social support and relationships, self-image and sexual functioning, psychological distress and functioning, fear of death/recurrence, and personal growth and coping. When available, this review also presents needs of young survivors (defined as <45 years of age), a particularly vulnerable population 16.
Methods
This literature review of the psychosocial health needs of OvCa survivors was conducted as one component of a larger review on OvCa survivorship. Keywords used in the search were developed by the authors and included ovarian neoplasm, disease-free survival, survivor(ship), epithelial tumor, germ cell tumor, sex cord tumor, stromal tumor, posttreatment and long-term survivor, adaptation, psychological, anxiety, body image, counseling, cognition, depression, family relations, fatigue, marriage, mental health, pain, patient satisfaction, recurrence, sexual dysfunction, physiological, resilience, quality of life, sexuality, social isolation, social support, spirituality, and stress. Searches were conducted using PubMed, PsycINFO, CINAHL, Cochrane, and Web of Knowledge databases. Peer-reviewed articles published in English between December 2000 and December 2010 on human subjects were included in the review.
Publications were imported into a database and all abstracts were assessed for relevancy. Review articles, case studies, articles that had a study sample of less than 20, were not specific to OvCa survivors, reported on efficacy of treatment or drug therapies, or were conducted outside of the United States were excluded. Studies conducted outside the United States were excluded because of differences in the healthcare systems, access and treatment options, and because this review will guide US Federal research and programmatic initiatives. Abstracts were classified as relevant, somewhat relevant, or not relevant. The full texts of papers classified as somewhat relevant were later reviewed to determine a final classification of relevant or not relevant. For quality assurance, a second reviewer was randomly assigned to review 25% of all abstracts for relevance classification, with 99% concordance. Snowball sampling was also conducted. (i.e., upon full text review of all relevant articles, references that seemed relevant on the basis of the title were retrieved and reviewed.)
Data were abstracted from relevant articles into an Excel spreadsheet according to six psychosocial domains: QoL, social support and relationships, self-image and sexual functioning, psychological distress and functioning, fear of death/recurrence, and personal growth and coping. These domains were generated for this study based upon keywords used in the psychosocial search. Findings from one article may have been abstracted to multiple domains when appropriate.
Data related to young survivors were abstracted separately. For this review, young survivors are defined as women <45 years of age because common public health measures, such as the US National Survey of Family Growth, and the US Healthy People 2020 objectives, define young women or women of reproductive age as 15–44 years. Information was considered relevant to young OvCa survivors if it either 1) specifically addressed young survivors in the results or 2) came from studies that included women with germ cell tumors (because germ cell tumors are typically diagnosed in young women 17). Findings unique to young survivors are highlighted within each section when appropriate.
Of the 1634 papers related to OvCa survivorship that were identified, 47 were either relevant, and snowball sampling identified an additional 21 articles. Of the final 68 articles, 28 were related to the psychosocial health of OvCa survivors (Table 1). The psychosocial measurement tools used in each article are presented in Table 2.
| Study | Study design | Sample size | Average age of participant (years) | Average time since diagnosis of participant (years) | Date of original data collection | Recruitment strategy |
|---|---|---|---|---|---|---|
| Bodurka-Bevers et al. 23 | Cross-sectional | 246 | 56.7 | 2.4 | Not available | Upon presentation to the Gynecologic Oncology Center or hospital. |
| Carmack-Taylor et al. 41 | Cross-sectional | 232 | 56.6 | 4.3 | Not available | Outpatients with appointments at the University of Texas MD Anderson Gynecologic Oncology Center over a 6 month period. |
| Champion et al. 19 | Cross-sectional | 132 | 35.9 | 10.2 | Not available | Participants in 4 GOGs. Eligible patients were identified through GOG Statistical Office. |
| Danhauer et al. 30 | Pilot/feasibility intervention | 51 | 58.9 | 1.25 | Not available | Identified by physicians from a comprehensive cancer center and regional cancer center. |
| de Moor et al. 28 | Prospective | 90 | 59.3 | 2.6 | Not available | University of Texas MD Anderson Cancer Center from 1999 to 2003. |
| Ferrell, B. et al. 26 | Cross-sectional | 1383 | Not available | 4 | November 2002–February 2003 | November 2002 issue of Conversations! The International Newsletter for Those Fighting Ovarian Cancer |
| Ferrell, B. et al. Symptom concerns of women with ovarian cancer. 39 | Qualitative analysis of written correspondence | 21,806 pieces of correspondence | Not available | Not available | 1993–2000 | Not available |
| Ferrell, B. et al. Psychological well being and quality of life in ovarian cancer survivors. 8 | Qualitative analysis of written correspondence | 21,806 pieces of correspondence | Not available | Not available | January 1994–December 2000 | Not available |
| Ferrell, B.R. et al. A qualitative analysis of social concerns of women with ovarian cancer. 37 | Qualitative analysis of written correspondence | 21,806 pieces of correspondence | Not available | Not available | January 1994–December 2000 | Not available |
| Ferrell, B.R. et al. Meaning of illness and spirituality in ovarian cancer survivors. 24 | Qualitative analysis of written correspondence | 21,806 pieces of correspondence | Not available | Not available | January 1994–December 2000 | Not available |
| Fox et al. 21 | Secondary data analysis | 76 | 52.5 | 2.9 | Not available | Association of Cancer Online Resources using an advertisement. |
| Gershenson et al. 35 | Case-control | 132 | 35.9 | 10.2 | Not available | Women treated in GOG at the University of Texas MD Anderson Cancer Center. |
| Jackson et al. 36 | Retrospective | 421 | 67 | Not available | 1995–2000 | Not available |
| Kornblith et al. 20 | Cross-sectional | 42 | 61.2 | 6.1 | 2007 | not found |
| Matulonis et al. 42 | Cross-sectional | 58 | 56.2 | 5.8 | Not available | Patients were originally contacted by mail, after permission had been granted by their oncologist. |
| Mirabeau-Beale et al. 31 | Cross-sectional | 100 | 55.7 (early stage) 61.2 (advanced stage) | 7.4 (early stage) 6.1 (advanced stage) | June 2005–November 2007 | Survivors were contacted by mail or during routine clinic visits. |
| Monahan et al. 40 | Case-control | 132 | 35.9 (survivor), 35.7 (control) | 10.2 | Not available | GOG or MD Anderson Cancer Center via mail or phone |
| Norton et al. 33 | Cross-sectional | 143 | 55.45 | 1.8 | Not available | Approached in outpatient oncology clinics. |
| Norton et al. 32 | Cross-sectional | 143 | 55.2 | 1.6 | Not available | Outpatient clinics of 3 cancer centers and 2 community hospitals. Screened for eligibility by a study assistant and approached after an appointment with their oncologist. |
| Otis-Green et al. 25 | Case-control | 33 | 58 | not found | Not available | not found |
| Parker et al. 43 | Cross-sectional | 126 | 58.7 | 2.7 | Not available | Outpatient medical visits at The University of Texas MD Anderson Cancer Center |
| Ponto et al. 38 | Cross-sectional | 60 | 59 | 5.4 | Not available | Network and snowball sampling through the National Ovarian Cancer Coalition. |
| Shinn et al. 44 | Secondary data analysis from cross-sectional study | 254 | 59.1 | Not available | Not available | Women were approached during their chemotherapy clearance. |
| Swenson et al. 34 | Cross-sectional | 109 | 35.4 | 9.9 | Not available | Contacted by their treatment sites. |
| von Gruenigen et al. 27 | Cross-sectional | 361 | 57 | Not available | June 1994–January 2001 | not found |
| von Gruenigen et al. 18 | Case-control | 361 | Not available | Not available | Not available | not found |
| von Gruenigen et al. 29 | Prospective cohort | 42 | 56.4 | Not available | December 2000–June 2004 | Two gynecologic oncology offices. |
| Wenzel et al. 22 | Cohort | 49 | 64.6 | 8.7 | Not available | Identified through GOG statistical office database. Physician verbally invites woman to participate. |
- GOG, Gynecologic Oncology Group.
| Instruments | Study |
|---|---|
| Quality of lifec | |
| Cancer Rehabilitation Evaluation System 45 | Norton et al. 32 |
| Complimentary Therapy Assessment 46 | Matulonis et al. 42; Mirabeau-Beale et al. 31; von Gruenigen et al. 29 |
| European Organization for Research and Treatment of Cancer QoL Questionnaire (EORTC QLQ-C30); and European Organization for Research and Treatment of Cancer Ovarian (EORTC OV28) 47, 48 | Kornblith et al. 20; Matulonis et al. 42; Mirabeau-Beale et al. 31 |
| Fox Simple Quality of Life Scale (FSQOLS) 49 | Fox et al. 21 |
| Functional Assessment of Cancer Therapy (FACT) | Bodurka-Bevers et al. 23; Carmack-Taylor et al. 41; Champion et al. 19; Danhauer et al. 30; de Moor et al. 28; Kornblith et al. 20; Mirabeau-Beale et al. 31; Monahan et al. 40; Shinn et al. 44; von Gruenigen, et al. 29; von Gruenigen et al. 27; von Gruenigen et al. 18; Wenzel et al. 22 |
| General (FACT-G) 50; | |
| Ovarian Cancer (FACT-O) 51 | |
| Neurotoxicity (FACT-NTX) 52 | |
| Gynecologic Oncology Group Neurotoxicity (FACT/GOG-Ntx) 52 | |
| Functional Assessment of Chronic Illness Therapy (FACIT) | Champion et al. 19; Kornblith et al. 20; Matulonis et al. 42; Mirabeau-Beale et al. 31; Monahan et al. 40; von Gruenigen, et al. 29 |
| Fatigue (FACIT-F) 53 | |
| Spirituality (FACIT-Sp) 54 | |
| Gynecologic Symptoms Scale 55 | Champion et al. 19; Gershenson et al. 35; Monahan et al. 40 |
| Illness Intrusiveness Scale 56 | Wenzel et al. 22 |
| Medical Outcomes Study (MOS) 36 Item Short Form Survey 57 (SF-36) | Champion et al. 19; Fox et al. 21; Monahan et al. 40; von Gruenigen, et al. 29; Wenzel et al. 22 |
| Memorial Symptom Assessment Scale 58 | Carmack-Taylor et al. 41 |
| Quality of Life-Cancer Survivorship (QOL-CS) Inventory 59 | Wenzel et al. 22 |
| Quality of Life (QOL) Ovarian Cancer Tool 60 | Ferrell, B. et al. 26; Otis-Green et al. 25 |
| Social support and relationships | |
| Duke-UNC Functional Social Support questionnaire (DUFSS) 61 | Champion et al. 19; Monahan et al. 40; Wenzel et al. 22 |
| Dyadic Adjustment Scale (DAS) 62 | Champion et al. 19; Gershenson et al. 35; Matulonis et al. 42; Monahan et al. 40 |
| Family Adaptability, Partnership, Growth, Affection and Resolve (APGAR) scale 63 | Champion et al. 19; Monahan et al. 40 |
| Medical Outcomes Study (MOS) Social Support Survey 64 | Kornblith et al. 20; Matulonis et al. 42; Mirabeau-Beale et al. 31 |
| Perceived Negative Behaviors Scale 65 | Norton et al. 32 |
| Self-image and sexual functioning | |
| Cancer and Leukemia Group B (CALGB) Sexual Functioning Scale 66 | Matulonis et al. 42; Mirabeau-Beale et al. 31 |
| Reproductive Concerns Scale 67 | Champion et al. 19; Gershenson et al. 35; Monahan et al. 40 |
| Rosenberg Self-Esteem Scale 68 | Norton et al. 32 |
| Sexual Activity Questionnaire (SAQ) 69 | Carmack-Taylor et al. 41; Champion et al. 19; Gershenson et al. 35; Monahan et al. 40; Wenzel et al. 22 |
| Sexual Problems Related to Cancer 70 | Kornblith et al. 20 |
| Sexual Self-Schema Scale 71 | Champion et al. 19; Gershenson et al. 35; Monahan et al. 40 |
| Gynecologic concerns scaled | Wenzel et al. 22 |
| Psychological distress and functioning | |
| Beck Depression Inventory (BDI) 72 | Norton et al. 33 |
| Beck's Hopelessness Scale 73 | Kornblith et al. 20; Matulonis et al. 42; Mirabeau-Beale et al. 31 |
| Center for Epidemiologic Studies-Depression (CES-D) Scale 74 | Bodurka-Bevers et al. 23; Carmack-Taylor et al. 41; Champion et al. 19; de Moor et al. 28; Monahan et al. 40; Parker et al. 43; Wenzel et al. 22 |
| Impact of Events Scale (IES) and Revised Impact of Event Scale (R-IES) 75 | Monahan et al. 40; Norton et al. 33; Wenzel et al. 22 |
| Life Event List 76 | Matulonis et al. 42 |
| Life Orientation Test-Revised (LOT-R) 77 | de Moor et al. 28 |
| Mental Health Inventory 78; MHI-17 79 | Kornblith et al. 20; Matulonis et al. 42; Mirabeau-Beale et al. 31; Norton et al. 33; Norton et al. 32 |
| Mishel Uncertainty in Illness Scale (MUIS) 80 | Otis-Green et al. 25 |
| Physician's Health Questionnaire (PHQ-9) 81 | Shinn et al. 44 |
| Perceived Stress Scale (PSS) 82 | de Moor et al. 28 |
| Positive and Negative Affect Scale (PANAS) 83 | Champion et al. 19; Monahan et al. 40 |
| Post-Traumatic Stress Disorder (PTSD) Checklist-Civilian (PCL-C) 84 | Kornblith et al. 20; Matulonis et al. 42; Mirabeau-Beale et al. 31 |
| Psychological Distress Thermometer 85 | Otis-Green et al. 25 |
| Spielberger State-Trait Anxiety Inventory 74 | Bodurka-Bevers et al. 23; Carmack-Taylor et al. 41; de Moor et al. 28; Parker et al. 43 |
| Stressful Life Events Instrument 86 | Monahan et al. 40; Matulonis et al. 42 |
| Symptom Distress Scale 87 | Ponto et al. 38 |
| Treatment-Specific Optimism Scale (TSOS) 88 | de Moor et al. 28 |
| Zubrod Score 89 | Bodurka-Bevers et al. 23; Carmack-Taylor et al. 41 |
| CA125 preoccupationd | Parker et al. 43 |
| Fear of death/recurrence | |
| Fear of Relapse/Recurrence Scale 90 | Kornblith et al. 20; Matulonis et al. 42; Mirabeau-Beale et al. 31 |
| Personal growth and coping | |
| Confidence Adjusting to Illness Scale (CAIS) (adapted from 91) | Champion et al. 19; Wenzel et al. 22 |
| Constructed Meaning Scale 92 | Ponto et al. 38 |
| Impact of Cancer Scale 93 | Kornblith et al. 20 |
| Integrative Cancer Experience Scale (ICES) (no citation available) | Champion et al. 19; Wenzel et al. 22 |
| Post Traumatic Growth Inventory (PTGI) 94 | Champion et al. 19; Matulonis et al. 42; Monahan et al. 40; Ponto et al. 38; Wenzel et al. 22 |
| Psychological Adjustment to illness Scale – Self-Report (PAIS-SR) 95 | Ponto et al.,38 |
| Other | |
| Unmet Needs 96 | Kornblith et al. 20; Matulonis et al. 42; Mirabeau-Beale et al. 31 |
| Ovarian cancer knowledged | Parker et al. 43 |
| Perceived controld | Norton et al. 32 |
- a Ferrell, et al. 39 (Symptom concerns of women with ovarian cancer; Psychological well being and quality of life in ovarian cancer survivors; A qualitative analysis of social concerns of women with ovarian cancer; and Meaning of illness and spirituality in ovarian cancer survivors) and Jackson et al. 36 did not use scales in their studies.
- b Von Gruenigen et al. 29 included the Eating Pattern Assessment Tool, but that tool is not reported in this table.
- c Seven unidentified quality of life (QoL) scales used in Swenson et al. are not included in this table.
- d Scale developed for study
Results
Literature review
Quality of life (QoL)
Overall, OvCa survivors report good QoL when compared with the general population 18-21 and other cancer survivors 22, with potential improvements over time 19 and well into survivorship. Some survivors report being happy, feeling loved, and having interest in daily activities 20. However, one study found subscale QoL scores were lower for physical, functional, and emotional well-being but higher for social well-being compared with the nonsurvivor female adult population 18. Poorer QoL in OvCa survivors was significantly associated with increased levels of anxiety and depression 23, and some women described uncertainty and hopelessness after experiences with cancer 24.
Several factors are associated with improved QoL, such as supportive relationships 25, 26 currently not receiving treatment 23, 26, and experiencing fewer physical symptoms 23, 27. Optimism was positively associated with health-related QoL and lower levels of distress in patients undergoing chemotherapy 28. Compared with the nonsurvivor US population, OvCa survivors report higher levels of social well-being 18, and one study found divorced or separated survivors reported higher social/family well-being than those who were married 23.
Some women expressed spiritual changes as a result of their experiences with OvCa. Women reported that spirituality helped them discern meaning from their cancer experience and maintain hope 24, and that their faith was important to them as it brought comfort and strength 20. Wenzel et al. found that almost half of the sample reported high spiritual QoL similar to controls. Spiritual well-being is positively associated with personal growth and ability to integrate the cancer experience 22. However, some women may experience a loss of faith after experiences with cancer 24.
Fox et al. found that pain was significantly correlated with fatigue, and that fatigue and depression were correlated with QoL and remain with survivors well into survivorship period 21. Survivors had lower QoL scores in physical and fatigue domains postoperatively when compared with the preoperative cohort 29. Although some interventions may address physical QoL in survivors, a 10-week yoga intervention did not significantly change QoL scores for survivors posttreatment 30.
The relationship between QoL and stage at diagnosis is unclear. Ferrell et al. found women diagnosed with earlier stage OvCa had higher average QoL scores than those diagnosed at later stages 26. However, Mirabeau-Beale et al. reported no difference in overall QoL between women with early- and advanced-stage OvCa, though this sample included long-term survivors, the majority of whom were not currently reporting OvCa-related symptoms or physical side effects 31.
Young survivors
Young OvCa survivors have lower QoL scores when compared with older survivors 18, 23, 26, but younger age at diagnosis is associated with better physical functioning 19.
Social support and relationships
Greater social support is related to higher self-esteem 32, decreased depression and anxiety 19, 33, and overall good health for OvCa survivors 19. Better social functioning 31 and social support 20 have been reported among advanced-stage survivors, compared with early stage survivors.
Women with OvCa may experience social isolation, stemming from diagnosis with a less common cancer with fewer long-term survivors 8, 24. OvCa survivors need social support from 34 and have a desire to build relationships with other OvCa survivors 35, 36. Fellow survivors understand the physical and psychological challenges of living with the disease, as loved ones often have difficulty fully comprehending a life with cancer 24, 37. Support groups offer OvCa survivors an opportunity to meet and network with women who have experienced the same issues, providing comfort and confidence, and an opportunity to share symptom management techniques 24, 37. However, some OvCa survivors report difficulty accessing support resources 24. Wenzel et al. found that more than half of their study sample would have joined a support group at diagnosis if it had been offered, with most expressing a desire to participate in individual counseling 22.
OvCa survivors report stronger, more positive relationships with significant others, compared with controls 35, but fewer years in a relationship is a significant predictor of poorer adjustment among women with recurrent OvCa 38. Physical fatigue can impact ability to provide support to their families, often causing frustration and guilt 39; some OvCa survivors report needing assistance to resolve personal family problems 38.
Young survivors
Greater social support has been associated with less depression, less physical pain, and better general health among young survivors 19. When compared with age-matched controls of women without cancer, young survivors experienced greater social support from their relationships, especially in the area of emotional social support 40. Like older survivors, young OvCa survivors desire support from fellow survivors and peers who have had similar diagnosis, treatment, and survivorship experiences, as they are often disappointed when friends and family are not able to empathize 34.
Self-image and sexual functioning
Abdominal scars, hair loss, weight gain, and prophylactic procedures, such as bilateral oophorectomy and hysterectomy that remove organs symbolic of female identity, considerably impact body image among survivors 24, 31, 34. Patients who experience more significant physical changes, and therefore impact to self-image, perceive less control over the consequences of their illness and treatment 32. Regrowth of hair helps survivors in remission to ‘heal psychological wounds’ and ‘refocus their lives’ 8.
OvCa survivors report low sexual activity and sexual satisfaction 27, 41, 42, causing strain on their personal relationships 25, 34, 37. Multiple studies reported increased sexual problems and sexual dysfunction and decreased sexual activity postdiagnosis 31, 41, 42. Chemotherapy and surgically induced menopause from oophorectomy can result in vaginal dryness, painful intercourse, fatigue, and decreased libido 31, and survivors cite lack of interest, fatigue, decreased libido, decreased arousal, and problems with orgasm as reasons for sexual inactivity 22, 41, 42. Sexual discomfort was highest among women with greater menstrual/gynecological symptoms and more reproductive concerns 19. Kornblith et al. found that sexual issues (decreased interest in sex, decreased sexual activity, and pain during intercourse) were the greatest of unmet needs, with almost half of survivors reporting that less help was received than needed for sexual issues 20. Women with more time since diagnosis and those not receiving treatment were more likely to be sexually active 41, and sexual pleasure was higher for women who had fewer gynecological symptoms and were married 19.
Young survivors
Among young survivors, OvCa greatly impacts sexuality 40. Although younger age at diagnosis is related to better overall sexual functioning with increased social support and fewer gynecologic symptoms 19, young survivors report decreased libido 34, less sexual pleasure and satisfaction, and worse sexual functioning compared with women without OvCa 35, 40. Survivors who had an oophorectomy showed significantly greater sexual discomfort when compared with survivors who had not undergone this surgery 40.
Psychological distress and functioning
OvCa survivors can experience high levels of distress, depression, and anxiety 23, 26, 33, 42, 43, compared with the general population and nongynecologic cancer survivors 23, 33, 42, 43. Although some survivors may report positive well-being, some OvCa survivors may be ‘emotionally at risk’ 22, feeling sad and depressed, and having problems with memory and concentration 34.
A period of great distress for OvCa survivors is at diagnosis, when one abruptly transitions from healthy woman to a cancer patient 8, 22, 26, 33. Diagnosis may illicit feelings of loss of control, fear, and uncertainty for the future 2, 24. Some survivors report feeling the equivalent of a death sentence due to the low survival and high recurrence associated with OvCa 8. Some research indicates that survivors with more advanced-stage OvCa experience greater distress 20, 33, whereas one study found no association between stage of disease and distress 23. OvCa survivors who report higher levels of optimism at the start of chemotherapy reported lower levels of distress 28.
Several studies report significant levels of depression among OvCa survivors 23, 33, 43, 44. Increased time since diagnosis may decrease levels of depression 22, 31, and anxiety appears to be more problematic than depression in women with stage III or IV OvCa 27. OvCa survivors experiencing greater physical symptoms have higher levels of distress, depression, and anxiety 23, 32, 41, possibly because of symptoms being perceived as disease progression 8, 44. Physical symptoms can result in lower functioning and impaired ability to complete daily activities 23, 32. Depression and fatigue remain with OvCa survivors well into survivorship 21. Both low knowledge of OvCa and increased preoccupation with CA125 levels were associated with symptoms of depression and anxiety 43.
Young survivors
Young OvCa survivors were more likely to have higher levels of distress and depression compared with older survivors 23, 33, 38. However, one study found long-term germ cell survivors and age-matched controls reported similar levels of depression 40.
Fear of death/recurrence
Many survivors report significant concern regarding recurrence and dying 25, 44. More physical symptoms, depression 44, and emotional maturity 18 can increase an OvCa survivor's fear of death. One study found cancer stage was not associated with fear of death, indicating women at all stages are equally at risk for anxiety associated with fear of death 44.
Studies report 56–67% of both early- and advanced-stage OvCa survivors fear recurrence 20, 42. Fear of recurrence may continue for years, postdiagnosis 22 can impact QoL and cause emotional distress among survivors 8, 20, 22, 23, 26, 31, 42. OvCa survivors viewed a recurrence as an indication that their disease was incurable and considered it the ‘beginning of the end’ 8. Some women experienced fears upon completion of treatment, as they were not actively fighting the disease 8. Fear of recurrence can cause anxiety for survivors in remission and may dampen the joy of being disease-free 8, 24.
Young survivors
Younger age is significantly associated with fear of death 44.
Personal growth and coping
Despite the many challenges of living with OvCa, survivors often experience personal growth 22, 24, 38, 40 through their spiritual lives, personal relationships 8, 22, 24, 25, 40, and renewed perspectives on life 8, 20, 24, 25. Many OvCa survivors report continuing to experience hope during their illness but higher levels of depression, lower levels of social support/well-being, and increased number of treatments were associated with a higher risk for losing hope 44. Several studies found a majority of OvCa survivors ‘quite a bit’ or ‘very much’ felt a sense of purpose in their lives and had a reason for living 20, 31, 42. However, this may be attributed to the survivors being an average of 6 years posttreatment and therefore any psychosocial issues had lessened with time 20, 42. Wenzel et al. reported that survivors were generally optimistic, and that the cancer experience positively changed their views on life, relationships, and spirituality 22. Although survivors mourn the changes in their lives as the result of OvCa, through their losses, many discovered new personal beliefs 34.
Survivors attempt to alleviate the psychological burden of treatment through being active, traveling, and increasing quality time with family and friends 8. Supporting other OvCa survivors, participating in OvCa advocacy, maintaining a positive attitude, disregarding statistics, living for the moment, as well as focusing on the future, and journaling are important adaptive and coping techniques 8. A sense of spirituality is also associated with personal growth and the capacity to derive a positive meaning from the OvCa experience 22.
Young survivors
Young OvCa survivors may struggle more with spiritual coping compared with older survivors 19. In contrast, Monahan et al. found that long-term survivors of ovarian germ cell tumors reported more positive changes as a result of their cancer and retrospectively reported more positive changes in the areas of relating to others, appreciation of life, and spiritual change compared with age-matched controls 40.
Measure and scales
Among the 28 articles included in this review, 66 unique psychosocial scales were identified (Table 2), including four developed for their respective studies to measure self-image and sexual functioning (n = 1) 22, psychological distress and functioning (n = 1) 43, and general knowledge and perceived control, categorized as ‘Other’ (n = 2) 32, 43. Additionally, Swensen et al. used seven unspecified QoL tools 34. The remaining 55 measures were used to assess QoL (n = 17), social support and relationships (n = 5), self-image and sexual functioning (n = 6), psychological distress and functioning (n = 19), fear of death/recurrence (n = 1), and personal growth and coping (n = 6). The Unmet Needs tool was used to measure multiple domains and categorized as ‘Other’.
Discussion
This review consolidates the wide-ranging psychosocial needs and concerns reported by OvCa survivors and articulates priority areas that may necessitate attention and intervention. A survivor's psychosocial health is comprised of personal, social, and environmental factors unique to her life. It is important to acknowledge the interrelationship of these psychosocial needs, and that for many women, one issue can complement or exacerbate another.
Some of the greatest needs identified were those related to physical complications and side effects, which profoundly impact OvCa survivors across all six psychosocial domains presented in this review. Impaired physical functioning and fatigue predicts poor QoL; women with physical changes as a result of OvCa perceive having less control over their illness. Physical symptoms increase distress, can impact self-image, and sexual satisfaction, causing a strain on personal relationships, and possibly increase fear of death. OvCa survivors of all ages need access to social support services, and relational support is critical when survivors feel uncertainty, depression, and anxiety. This review has also identified inherent assets of OvCa survivors that may be strengthened by the cancer experience. QoL of an OvCa survivor can improve after diagnosis, despite the challenges of living with cancer. OvCa survivors cite opportunities for reflection and renewed perspectives, and experience personal growth in their spiritual lives and relationships.
Psychosocial survivorship needs of young survivors are particularly important to consider. The literature suggests young survivors are likely to have higher levels of distress and depression than older survivors. Although younger age at diagnosis is related to better sexual and physical functioning, young survivors have lower QoL scores when compared with older survivors. However, like older survivors, young OvCa survivors desire support from fellow survivors and peers who have had similar diagnosis, treatment, and survivorship experiences and report decreased libido, less sexual satisfaction and functioning compared with women without OvCa.
A variety of psychosocial measures were used to measure psychosocial health of OvCa survivors in the studies included in this review. As studies are planned, it is important to continue to use measures and scales that have been validated with OvCa survivors, ensuring that domains and constructs are measured appropriately, and comparison of results between studies.
Studies included in this review recommend that research and interventions should target QoL of survivors and aim to reduce and alleviate distress, fear of recurrence, and sexual dysfunction 31. Future opportunities should also address whether reducing the physical side effects of treatment improve functional well-being 27, the degree to which self-esteem affects long-term QoL 40, and whether sexual activity and reproductive concerns questions are appropriate to screen for referral to counseling 40. How survivors acquire information about diagnosis and treatment, whether levels of knowledge impact psychosocial adjustment over time 43, and if survivors are participating in psychosocial services and support, and whether failure to do so reflects choice, poor access, or lack of awareness also should be explored 33. Finally, larger, more rigorous studies are needed with sufficiently large numbers of racial/ethnic minorities to support comparisons among groups and to assess the role of culture and ethnicity on long-term outcomes 44.
Several studies in this review stress the importance in training healthcare professionals to identify survivors who may require ongoing psychological treatment or psychiatric intervention, as symptoms such as depression are often underdiagnosed 21, 33. It is recommended psychological and emotional evaluations be given routinely throughout the disease trajectory from diagnosis, through treatment, and into long-term survivorship 8, 20, 21, 25, 29, 42. Providers should also be aware that survivors experiencing low levels of emotional and social support, self-efficacy, and family functioning have increased need for referral to counseling and psychosocial support and evaluation 23, 40. Support services that incorporate husbands and/or partners and children and provide access to other OvCa survivors are vital 37. Survivorship care plans that include medical and treatment history, psychosocial issues, and recommendations for future care should be given to the patient and all providers upon the completion of treatment 20. Psychological support should include interdisciplinary collaboration among oncologists, nurses, and social workers 8, 38. Improving survivors' knowledge of OvCa and teaching cognitive strategies and positive adaptation skills can help manage and reduce stress and improve emotional well-being 18, 43.
There are inherent limitations both of this literature review and of the studies included in the review. Because our analysis only included research conducted in the United States, many otherwise relevant findings were excluded. Likewise, relevant articles may have been inadvertently excluded on the basis of the configuration of search terms used to search databases. Additionally, the scales presented in Table 2 are categorized for the purposes of this paper and are not officially representative of the domain within which they are categorized. The scales categorized in one particular domain in Table 2 may not have been abstracted and presented in the same domain in the results section. Limitations to the articles reviewed included modification of valid psychometric instruments, use of nonvalidated questionnaires, not reporting scales used to assess psychosocial issues, homogenous study samples recruited from academic health centers, cross-sectional study design, small study samples, no control group, or reporting of statistical significance. The treatment of OvCa has changed dramatically over the past decade which significantly impacts QoL; some of the studies in this review may have enrolled women with less novel treatment approaches. There are several strengths to this study. The included reference of measures in Table 2 could be used for future research and study design. To the author's knowledge, this is the first paper to synthesize OvCa survivor's needs according to common psychosocial domains in one publication, and the first review to include the psychosocial health needs of young OvCa survivors (<45 years of age).
In conclusion, OvCa broadly and radically impacts the immediate and long-term psychosocial health outcomes of a survivor. This review highlights not only the essential work already completed in understanding OvCa survivor's psychosocial health needs but also the unanswered questions and areas for further inquiry and improvement. More research is needed to further explore the relationship between age at diagnosis and survivorship, and larger, more rigorous studies are needed to understand the long-term outcomes for survivors. Without an effective screening tool for early detection of OvCa, it is additionally critical to continue to focus on improving survivor's psychosocial health and QoL. As survivorship increases and lengthens for cancer survivors of all ages, supporting and exploring the evolving needs and assets of OvCa survivors will aid in further developing and reinforcing comprehensive programs and nuanced, targeted intervention.
Acknowledgement
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. This work was funded by Centers for Disease Control and Prevention funds.
Conflict of interest
The authors declare they have no conflict of interest.
