BACKGROUND
Based on evidence that psychologic distress often goes unrecognized although it is common among cancer patients, clinical practice guidelines recommend routine screening for distress. For this study, the authors sought to determine whether the single-item Distress Thermometer (DT) compared favorably with longer measures currently used to screen for distress.

METHODS
Patients (n = 380) who were recruited from 5 sites completed the DT and identified the presence or absence of 34 problems using a standardized list. Participants also completed the 14-item Hospital Anxiety and Depression Scale (HADS) and an 18-item version of the Brief Symptom Inventory (BSI-18), both of which have established cutoff scores for identifying clinically significant distress.

RESULTS
Receiver operating characteristic (ROC) curve analyses of DT scores yielded area under the curve estimates relative to the HADS cutoff score (0.80) and the BSI-18 cutoff scores (0.78) indicative of good overall accuracy. ROC analyses also showed that a DT cutoff score of 4 had optimal sensitivity and specificity relative to both the HADS and BSI-18 cutoff scores. Additional analyses indicated that, compared with patients who had DT scores < 4, patients who had DT scores ≥ 4 were more likely to be women, have a poorer performance status, and report practical, family, emotional, and physical problems (P ≤ 0.05).

CONCLUSIONS
Findings confirm that the single-item DT compares favorably with longer measures used to screen for distress. A DT cutoff score of 4 yielded optimal sensitivity and specificity in a general cancer population relative to established cutoff scores on longer measures. The use of this cutoff score identified patients with a range of problems that were likely to reflect psychologic distress. Cancer 2005. © 2005 American Cancer Society.

/pdf/screening-for-psychologic-distress-in-ambulatory-cancer-nwttuvydnd.pdf

Screening for psychologic distress in ambulatory cancer patients

Objective: To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience.

Methods: This systematic review identified the types of problems and burdens that FCs of cancer patients experience during the patient's illness. We also analyzed the language caregivers use to communicate their problems and responsibilities related to caregiving for the cancer patient.

Results: Of 2845 titles identified, 192 articles met the inclusion criteria and are included in this review. Of these, 164 were research-based. In addition to FC responsibilities and the impact of being a caregiver on daily life, a number of other physical, social, and emotional problems related to caregiving for these FCs were identified.

Conclusion: A substantial evidence base supports the conclusion that FCs experience many difficult problems and increased responsibilities during and after the patient is undergoing treatment and rehabilitation for cancer. The insights gained from this review will help researchers and clinicians to understand the complexity of problems and responsibilities FCs experience. This understanding may encourage them to include support for FCs as part of total or holistic patient care. However, more research is needed to better understand the variations in caregiving experiences over time; how the caregiving perspective is influenced by different cultural, ethnic, or socioeconomic backgrounds as well as gender and age; and how problems and responsibilities related to caregiving interfere with daily life. Copyright © 2009 John Wiley & Sons, Ltd.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/pon.1670

Review of the literature on the effects of caring for a patient with cancer.

Objective
Patient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research.

https://www.researchgate.net/profile/Carole_Mockford/publication/264054422_A_Systematic_Review_of_the_Impact_of_Patient_and_Public_Involvement_on_Service_Users_Researchers_and_Communities/links/544111790cf2a6a049a4ca0b.pdf

A systematic review of the impact of patient and public involvement on service users, researchers and communities.

BACKGROUND

The current study was conducted to assess symptom prevalence and symptom intensity and their relation to quality of life in medical oncology patients at a Veterans Affairs medical center.



METHODS

Consecutive inpatients and outpatients were asked to complete the Functional Assessment Cancer Therapy (FACT-G), Memorial Symptom Assessment Scale (MSAS), and the Brief Pain Inventory. Symptoms then were analyzed by their relation to Karnofsky performance status (KPS) and quality of life.



RESULTS

Two hundred forty patients participated. The median number of symptoms was 8 per patient (range, 0–30 symptoms). The 5 most prevalent symptoms were lack of energy (62%), pain (59%), dry mouth (54%), shortness of breath (50%), and difficulty sleeping (45%). Patients with moderate intensity pain had a median number of 11 symptoms and patients with moderate intensity lack of energy had a median number of 13 symptoms. The number of intense symptoms increased as the KPS decreased (P < 0.001). Patients with moderately intense pain or fatigue also were more likely to experience nausea, dyspnea, and lack of appetite. The number of symptoms rated as present on the MSAS was found to correlate significantly with the FACT-G Sum Quality of Life score.



CONCLUSIONS

Intense symptoms were highly prevalent in this population. The presence of pain, lack of energy, or poor performance status should lead to comprehensive symptom assessment. Patients free of disease nevertheless still may experience intense symptoms. The number of symptoms present may be a helpful guide to quality of life. Routine comprehensive symptom assessment may identify a significant fraction of patients who urgently require intensive symptom palliation. Cancer 2000;88:1175–83. © 2000 American Cancer Society.

/pdf/symptom-and-quality-of-life-survey-of-medical-oncology-5dp5sy5rod.pdf

Symptom and quality of life survey of medical oncology patients at a veterans affairs medical center: a role for symptom assessment.

Ovarian cancer is a life-threatening diagnosis which poses multiple challenges. The purpose of this study is to describe the quality of life (QOL) concerns and survivorship sequelae of long-term (>5 yr) early-stage ovarian cancer survivors accrued through the clinical cooperative Gynecologic Oncology Group. Forty-nine ovarian cancer survivors with a mean age at diagnosis of 55.9 yr (range 30–76) completed a telephone interview assessing QOL, psychosocial status, sexual functioning and late-effects of treatment. Results indicate that this disease-free early-stage sample enjoys a good QOL, with physical, emotional, and social well-being comparable to other survivors and same-aged noncancer cohorts. However, 20% of survivors indicated the presence of long-term treatment side effects, with a subset reporting problems related to abdominal and gynecologic symptoms, and neurotoxicity. Spiritual well-being was significantly positively associated with personal growth and mental health, and negatively associated with a declining health status. Lingering psychological survivorship sequelae included fear of follow-up diagnostic tests and fear of recurrence. Forty-three percent of respondents expressed that they would likely participate in a counseling program today to discuss psychosocial issues raised by having had ovarian cancer, and 56% stated that they would have attended a support program during the initial treatment if it had been offered. This information provides some insight into the complex survivorship relationships between quality of life, long-term physical and sexual sequelae, and factors of resilience and growth which appear to promote a sense of well-being as a result of the cancer experience. Copyright © 2002 John Wiley & Sons, Ltd.

Resilience, reflection, and residual stress in ovarian cancer survivorship : a gynecologic oncology group study

Despite growing interest in quality of life (QOL) as an important variable in nursing and health care, little research focuses on QOL in women with ovarian cancer (OVCA). The purpose of this study was to examine QOL in OVCA survivors. The convenience sample consisted of 152 women in all disease stages. Quantitative data were collected using the QOL-Cancer Survivors tool and a demographic sheet. Qualitative data were collected by asking participants to write their definitions and experiences of QOL since their diagnosis. Reliability and validity of all data and findings were established. Findings reveal that QOL is moderately high for this group of cancer survivors, despite some specific negative facets of the illness and treatment experience. Qualitative analysis elaborates the four domains of Ferrell's QOL model: physical, psychological, social, and spiritual well-being. Qualitative data also reflect the complexity of the cancer experience.

Quality of life in women with ovarian cancer

BACKGROUND
This report offers a unique analysis of the psychological distress associated with ovarian cancer in a review of natural correspondence between ovarian cancer survivors and an ovarian cancer newsletter.

METHODS
A review of 21,806 letters, cards, and e-mails reflecting correspondence from January 1994 to December 2000 between ovarian cancer survivors and the founding editor of Conversations!: The International Newsletter for those Fighting Ovarian Cancer was performed using ethnographic qualitative research methods. Statements related to the impact of disease were bracketed and coded within physical, psychological, social, and spiritual domains according to the City of Hope Quality of Life Ovarian Cancer instrument. Statements that reflected psychological well being were then evaluated with respect to the disease trajectory (i.e., diagnosis, treatment, remission, recurrence, and advanced disease/end of life).

RESULTS
A total of 1282 communications were identified that pertained to psychological well being. Findings based on major themes derived from the analysis included descriptions of stressors associated with disease status. Significant stressors were identified within all phases of diagnosis, treatment, remission, and recurrence. Women described both positive and negative effects of disease and frequently demonstrated resourcefulness and perseverance by sharing coping mechanisms and survival strategies.

CONCLUSIONS
The natural correspondence from women with ovarian cancer provided a rare opportunity to capture the psychological concerns of women throughout all stages of the cancer trajectory. Health care professionals' awareness of the common psychological stressors throughout the ovarian cancer trajectory may allow them to identify more readily the needs for support, leading to improvement in overall quality of life. Cancer 2003;98:1061–71. © 2003 American Cancer Society.

DOI 10.1002/cncr.11291

Psychological well being and quality of life in ovarian cancer survivors

Purpose/objectives To describe spirituality and meaning of illness in survivors of ovarian cancer. Design Ethnographic study based on seven years of natural correspondence among survivors of ovarian cancer and a support newsletter. Sample 21,806 letters, cards, and e-mails received from survivors of ovarian cancer from 1994-2000. Methods Analysis was based on the Quality of Life (QOL) Ovarian Cancer Instrument. Data were bracketed and assigned within a table according to QOL themes. Main research variables Spirituality, meaning, QOL, and cancer survivorship. Findings Spirituality was relied on heavily as a coping mechanism, as well as a method of deriving meaning from the cancer experience. Data from survivors of ovarian cancer validated previously established meaning in cancer themes and identified eight new themes specific to meaning in ovarian cancer survivorship. Conclusions The nature of ovarian cancer implicates specific characteristics that alter the meaning of QOL and survivorship. Spirituality is an important component of QOL and contributes to the process of deriving meaning from the ovarian cancer experience. Implications for nursing Knowledge of the unique survivorship issues of patients with ovarian cancer can enable nurses to improve their care for these women.

https://onf.ons.org/sites/default/files/X64U0802268HR5G6_first.pdf

Meaning of Illness and Spirituality in Ovarian Cancer Survivors

A diagnosis of ovarian cancer requires a woman to reevaluate her interactions with family, friends, and employers, and cope with unexpected and unwanted changes in areas spanning from financial stability to sexuality and fertility. Social well-being is the aspect of a patient's overall quality of life that encompasses these topics, as it has evolved to represent activities related to roles and relationships at work and at home. The purpose of this study was to explore the social well-being of women with ovarian cancer to better define their needs for the health care community. Data consisted of all correspondence (n = 21,806) sent to 'Conversations!: The newsletter for those fighting ovarian cancer' by women with ovarian cancer from 1994 to 2000. Using ethnographic, qualitative research methods, statements related to the impact of disease were bracketed and coded within physical, psychological, social, and spiritual domains according to the City of Hope Quality of Life Ovarian Cancer Instrument. Comments reflecting social well-being were categorized in sub-themes and reviewed for content. Statements related to social support were most common (n = 251) reflecting the need for support from family, friends, and other women with ovarian cancer. Distress regarding the genetic association of the disease comprised a major theme (n = 73). Family relationships were also discussed (n = 146) in light of the stress of changing roles and relationships at home. Issues related to employment and returning to work (n = 74) focused on both the difficulties in taking time off work to receive treat-ment and sense of achievement felt upon returning to work and regaining normalcy. The themes identified in this study challenge healthcare professionals to provide increased disease-specific support, as well as concomitant sup-port for husbands/partners and children of patients. Additional information on genetic testing and counseling for women at-risk due to a family history of ovarian cancer is also needed.

A qualitative analysis of social concerns of women with ovarian cancer.

PURPOSE: This qualitative study explored quality of life (QOL) in family caregivers of ovarian cancer patients to better define their needs for support. DESCRIPTION OF STUDY: One thousand one hundred pieces of correspondence written by family caregivers of ovarian cancer patients were contributed to the City of Hope investigators by the founder and editor of Conversations!: The International Newsletter for Those Fighting Ovarian Cancer. The investigators analyzed meaningful comments in the letters using content analysis methods. RESULTS: Comments by family caregivers reflected little concern for their own physical well-being and, instead, focused on the psychological, social, and spiritual aspects of their experiences. Correspondence on the psychological effects of caregiving demonstrated poor QOL stemming from feelings of lack of control and helplessness. Social data showed that family caregivers lacked support, were given to feelings of isolation, and experienced considerable anxiety regarding the genetic nature of the disease. Spiritual wellbeing was particularly important to caregivers, as they drew strength from their faith and were able to find positive meaning in their experiences. CLINICAL IMPLICATIONS: The study findings revealed that caregivers require additional support from the healthcare community, especially to address disease-specific needs in patients with ovarian cancer. The correspondence demonstrates a need in family caregivers to connect with others fighting the same disease. This study also identifies the need for support for at-risk women, as well as a continuing need for palliative-care services. KEY TERMS: Caregiver; Family caregiving; Ovarian cancer; Quality of life T

Cindy Melancon

Papers

Quality of life in women with ovarian cancer

Psychological well being and quality of life in ovarian cancer survivors

Meaning of Illness and Spirituality in Ovarian Cancer Survivors

A qualitative analysis of social concerns of women with ovarian cancer.

Family perspectives of ovarian cancer.