Cancer Rehabilitation Evaluation System-Short Form Research Articles

Factors influencing 5-year persistence to adjuvant endocrine therapy in young women with breast cancer

PurposeAlthough younger age has been negatively associated with persistence to adjuvant endocrine therapy (ET), factors contributing to non-persistence remain poorly understood. We assessed factors associated with non-persistence to ET and described the 5-year trajectories of quality of life (QoL) and symptoms in young women (≤40 years) with hormone receptor-positive breast cancer (BC). MethodsWe retrieved data on clinical characteristics and non-persistence from the medical annual records in the European cohort of the “Helping Ourselves, Helping Others: The Young Women's BC Study” (IBCSG 43-09 HOHO). Women completed surveys at baseline, biannually for three years, and annually for another seven years. Data collection included sociodemographic information, QoL aspects assessed by the Cancer Rehabilitation Evaluation System-Short Form and symptoms assessed by the Breast Cancer Prevention Trial symptom scales. Cox regression models were applied to identify factors associated with non-persistence. ResultsThe cumulative risk of interrupting ET within 5 years was 27.7 % (95 % CI, 21.5–35.2). The QoL subscale scores remained stable over 5 years, with slight improvements in the physical subscale. Hot flashes decreased (p < 0.001), while vaginal problems intensified (p < 0.001) over time. Being married without children and having difficulties interacting and communicating with the medical team were significantly associated with non-persistence. ConclusionsDiscussing the desire to conceive with partnered childless women and establishing a good relationship with the medical team may be important in addressing the non-persistence in young BC survivors. As recent data suggests the safety of pausing ET to conceive, this approach may be a reasonable future option to limit non-persistence.

The Influence of Family-Oriented Enabling Psychological Nursing on Posttraumatic Stress and Fear of Recurrence in Patients with Cervical Cancer.

Objective. The incidence of cervical cancer is high, which seriously threatens the life and health of women. At present, there were few studies on the application of family-oriented enabling psychological nursing in patients with cervical cancer. So, the purpose of this study was to explore the effect of family-oriented enabling psychological nursing on posttraumatic stress and fear of recurrence in patients with cervical cancer. The clinical data of 236 patients with cervical cancer treated in our hospital from January 2020 to December 2021 was retrospectively analyzed. According to different nursing methods, they were assigned to convention group (105 cases accepted the conventional nursing) and psychology group (131 cases accepted the family-oriented enabling psychological nursing). The PTSD Checklist-Civilian Version (PCL-C) scores, Fear of Progression Questionnaire-Short Form (FoP-Q-SF) scores, Cancer Rehabilitation Evaluation System-Short Form (CARES-SF) scores, and satisfaction rates of the two groups were compared. It turned out that the PCL-C score, FoP-Q-SF score, and CARES-SF score decreased in the psychology group and the convention group (P < 0.05) and the decreases of those three scores were more obvious in the psychology group. In comparison with the convention group, the nursing satisfaction rate of psychology group was higher (96.18% vs. 76.19%, P < 0.05). It could be concluded that family-oriented enabling psychological nursing had definite clinical application value in patients with cervical cancer, which could alleviate the symptoms of posttraumatic stress disorder and reduce the fear of recurrence, stabilize the perioperative psychological state, facilitate treatment, and improve the quality of life and satisfaction rate of patients and was worthy of promotion and application.

Psychometric Features of the Turkish Version of the Cancer Rehabilitation Evaluation System-Short Form for Patients With Cancer.

Background and Purpose: The Cancer Rehabilitation Evaluation System-Short Form (CARES-SF) is one of the first self-report measurement tools that addresses problems and rehabilitation needs of patients with cancer. This study aimed to examine the validity and reliability of the CARES-SF for Turkish-speaking patients with cancer. Methods: The Turkish version of the CARES-SF was administered to 300 patients with colorectal, lung, or breast cancer. Results: While the first six factors of the Turkish CARES-SF covered the same spectrum as the original scale's subscales, the present study suggests dividing the original psychosocial factors into two subscales: psychological and social (relatives and friends). Conclusions: This preliminary inquiry on the Turkish CARES-SF confirmed the validity and reliability of the original scale except for the shifting of a few items between subsections.

Fertility concerns, preservation strategies and quality of life in young women with breast cancer: Baseline results from an ongoing prospective cohort study in selected European Centers

ObjectivesMost research addressing needs and concerns of young patients with breast cancer (≤40 years) is retrospective. The HOHO European protocol is a prospective multicenter cohort study of young women with newly diagnosed breast cancer, about fertility, psychosocial and quality of life concerns. Here we report the baseline data and focus on predictors of fertility concerns. Materials and methodsPatient surveys and medical record review were used. The baseline survey included sociodemographic, medical and treatment data as well as questions on fertility concerns and preservation strategies. Subscales from the CAncer Rehabilitation Evaluation System-Short Form (CARES-SF) were administered to measure specific quality of life aspects. Uni- and multivariable modeling were used to investigate predictors of greater fertility concern. ResultsAmong 297 eligible respondents, 67% discussed fertility issues before starting therapy, 64% were concerned about becoming infertile after treatment, and 15% decided not to follow prescribed therapies. Fifty-four percent of women wished future children before diagnosis; of these, 71% still desired biologic children afterwards. In multivariable analysis, not having children was the only patient characteristic significantly associated with fertility concerns at diagnosis. Twenty-seven percent used fertility preservation strategies. Women who received chemotherapy reported greater physical (p = 0.021) and sexual difficulties (p = 0.039) than women who did not. Women who were married or had a partner reported less psychosocial problems than single women (p = 0.039). ConclusionsYoung women with newly diagnosed breast cancer have several concerns, including, but not limited to, fertility. The HOHO European study provides valuable information to develop targeted interventions.

An explorative study on systematic assessment of QOL and care needs with the CARES-SF in the early follow-up of patients with digestive cancer

Systematic assessment of QOL and care needs was applied in two gastroenterology departments to support "Cancer Care for the Whole Patient." Patients with digestive cancer were asked to complete the Cancer Rehabilitation Evaluation System-Short Form (CARES-SF) at the start of treatment and 3months later. Both times CARES data were processed, and summary reports on the retained insights were sent to the reference nurse for use in further follow-up of the patient. Patients' and reference nurse's experiences with the systematic CARES-assessment were explored with several survey questions and semi-structured interviews, respectively. The mean age of the 51 participants was 63years (SD11.17), 52.9% was male. With the CARES-SF, a large variety of problems and care needs was detected. Problems most frequently experienced, and most burdensome for QOL are a mix of physical complaints, side effects from treatment, practical, relational, and psychosocial difficulties. Only for a limited number of experienced problems a desire for extra help was expressed. All patients positively evaluate the timing and frequency of the CARES-assessment. The majority believes that this assessment could contribute to the discussion of problems and needs with healthcare professionals, to get more tailored care. Reference nurses experienced the intervention as an opportunity to systematically explore patients' well-being in a comprehensive way, leading to detection and discussion of specific problems or needs in greater depth, and more efficient involvement of different disciplines in care. Systematic QOL and needs assessment with the CARES-SF in oncology can contribute to more patient-centeredness and efficiency of care.

Seven-year follow-up for energy/vitality outcomes in early stage Hodgkin's disease patients treated with subtotal lymphoid irradiation versus chemotherapy plus radiation: SWOG S9133 and its QOL companion study, S9208.

We describe 7years of follow-up for the energy/vitality outcome in early-stage Hodgkin's disease patients treated on a randomized clinical trial that compared subtotal lymphoid irradiation (STLI) with combined modality treatment (CMT) (SWOG 9133). Survivorship research questions involved the extent to which symptoms/side effects endured over a follow-up period of 7years for this early-stage patient group. Two hundred thirty-nine patients participated in the quality of life (QOL) companion study (SWOG 9208) and completed the SF-36 vitality scale, SF-36 health perception item, Cancer Rehabilitation Evaluation System-Short Form (CARES-SF), and symptom distress scale. This paper reports vitality outcome results obtained from randomization, 6months, and annually for 7years. To assess changes in vitality over time, we used linear mixed models with patient as a random effect. Patients receiving CMT had lower observed vitality at 6months than did the STLI patients (p < .0001). However, beginning at year 1, vitality results did not differ significantly by treatment over the 5-year (p = .13) and 7-year (p = .16) follow-up periods. Vitality only slightly improved over baseline in either group after treatment. The results were similar after accounting for patterns of recurrence and missing data. This study demonstrated that patients with early-stage Hodgkin's disease experience a short-term (at 6months) decrease in vitality with treatment, which is more severe with CMT, but that after the first year, vitality scores were similar between the two treatment groups. Enduring fatigue results for patients receiving these therapies were not observed. Implications for cancer survivors These data provide comprehensive 7-year follow-up vitality information, an important symptom for early-stage lymphoma survivors.

Influence of follow-up by telephone on adherence and quality of life for breast cancer patients with hormonal therapy

Objective To explore the influence of follow-up by telephone on adherence and quality of life for breast cancer patients with hormonal therapy. Methods Totally 78 breast cancer patients with hormonal therapy were divided into the intervention group (40 cases) and the control group (38 cases). The control group were carried on routine guidance treatment and enjoined regular subsequent visit. The patients in intervention group were carried on the above-mentioned treatment and also receive regular follow-up by telephone. Through the follow-up by telephone we provided guidance for present and will present problems. Adherence for breast cancer patients with hormonal therapy and cancer rehabilitation evaluation system-short form(CARES-SF) were used to investigate the patients' adherence and quality of life six month after the intervention. Then we compared the adherence and quality of life before, six month of the intervention. The changes of adherence and quality of life scores were analyzed by repeated-measure ANOVA. Results The score of quality of life in the intervention group after 6 month of intervention was (25.43±6.04), while in the control group was (40.61±7.73) , the difference was significant between the two groups,P<0.05. The score of medication adherence in the intervention group after 6 month of intervention was (8.57±6.20), while in the control group was (14.12±6.63) , the difference was significant between the two groups,P<0.05. Conclusion Follow-up by telephone can improve adherence and quality of life for breast cancer patients with hormonal therapy. Key words: Follow-up studies; Telephone; Breast neoplasms; Medication adherence; Quality of life

Illness Uncertainty and Quality of Life of Patients with Small Renal Tumors Undergoing Watchful Waiting: A 2-year Prospective Study

BackgroundFew studies have examined factors associated with the quality of life (QOL) of patients with renal tumors. Illness uncertainty may influence QOL. ObjectiveTo prospectively examine the influence of uncertainty on general and cancer-specific QOL and distress in patients undergoing watchful waiting (WW) for a renal mass. Design, setting, and participantsIn 2006–2010, 264 patients were enrolled in a prospective WW registry. The decision for WW was based on patient, tumor, and renal function characteristics at the discretion of the urologist and medical oncologist in the context of the physician–patient interaction. Participants had suspected clinical stage T1–T2 disease, were aged ≥18 yr, and spoke and read English. The first 100 patients enrolled in the registry participated in this study. Outcome measurements and statistical analysisPatients completed questionnaires on demographics, illness uncertainty (Mishel Uncertainty in Illness Scale), general QOL (Medical Outcomes Study 36-item short-form survey), cancer-specific QOL (Cancer Rehabilitation Evaluation System–Short Form), and distress (Impact of Events Scale) at enrollment and at 6, 12, and 24 mo. Age, gender, ethnicity, tumor size, estimated glomerular filtration rate, comorbidities, and assessment time point were controlled for in the models. Results and limitationsAmong the sample, 27 patients had biopsies, and 17 patients had proven renal cell carcinoma. Growth rate was an average of 0.17cm/yr (standard deviation: 0.35). Mean age was 72.5 yr, 55% of the patients were male, and 84% of the patients were Caucasian. Greater illness uncertainty was associated with poorer general QOL scores in the physical domain (p=0.008); worse cancer-related QOL in physical (p=0.001), psychosocial (p<0.001), and medical (p=0.034) domains; and higher distress (p<0.001). ConclusionsThis study is among the first to prospectively examine the QOL of patients with renal tumors undergoing WW and the psychosocial factors that influence QOL. Illness uncertainty predicted general QOL, cancer-specific QOL, and distress. These factors could be targeted in psychosocial interventions to improve the QOL of patients on WW.

Factors associated with long-term functional outcomes, psychological sequelae and quality of life in persons after primary brain tumour

To examine factors impacting long-term functional outcomes and psychological sequelae in persons with primary brain tumours (BT) in an Australian community cohort. Participants (n = 106) following definitive treatment for BT in the community were reviewed in rehabilitation clinics to assess impact on participants' current activity and restriction in participation, using validated questionnaires: Functional Independence Measure (FIM), Perceived Impact Problem Profile (PIPP), Depression Anxiety Stress Scale, Cancer Rehabilitation Evaluation System-Short Form and Cancer Survivor Unmet Needs Measure. Mean age of the participants was 51 years (range 21-77 years), majority were female (56 %) with median time since BT diagnosis 2.1 years and a third (39 %) had high grade tumours. Majority showed good functional recovery (median motor FIM score 75). Over half reported pain (56 %), of which 42 % had headaches. Other impairments included: ataxia (44 %), seizures (43 %); paresis (37 %), cognitive dysfunction (36 %) and visual impairment (35 %). About 20 % reported high levels of depression, compared with only 13 % in an Australian normative sample. Two-third (60 %) participants reported highest impact on the PIPP subscales for psychological wellbeing (scores of >3 on 6-point scale) and participation (45 %). Factors significantly associated with poorer current level of functioning and wellbeing included: younger participants (≤40 years), recent diagnoses, aggressive tumour types and presence of pain. No significant differences in scale scores were found across various treatments (surgery, chemotherapy or radiotherapy) on outcomes used. Rehabilitation for BT survivors is challenging and requires long-term management of psychological sequelae impacting activity and participation. More research into participatory limitation is needed to guide treating clinicians.

Comprehensive Assessment of Quality of Life and Psychosocial Adjustment in Patients With Renal Tumors Undergoing Open, Laparoscopic and Nephron Sparing Surgery

We prospectively evaluated the general and cancer specific quality of life, and psychosocial adjustment of patients with a renal mass treated with radical vs partial nephrectomy via a laparoscopic or an open approach. A total of 172 patients with renal tumors completed questionnaires before surgery, and 3 weeks, and 2, 3, 6 and 12 months postoperatively. We assessed general quality of life using SF-36™ and cancer specific quality of life using the Cancer Rehabilitation Evaluation System-Short Form, in addition to intrusive thoughts, avoidance behaviors and fear of recurrence. We used mixed model regression analysis to compare these measures across surgery types during the study course, adjusted for tumor size, histology, stage and renal function. The SF-36 physical component score differed significantly by surgery type with time (p = 0.04). Patients treated with laparoscopy improved by month 2 while those treated with open surgery had poorer quality of life until month 3. Better cancer specific quality of life was reported in patients who underwent radical vs partial nephrectomy. Age also had a significant effect on outcomes. We report one of the most comprehensive patient reported prospective quality of life studies in patients with renal cell carcinoma. There were significant differences in quality of life and psychosocial adjustment outcomes during 1 year among patients treated with 1 of 4 commonly accepted surgical renal procedures. These outcomes must be evaluated in the context of tumor characteristics, cancer specific outcomes and renal function. These quality of life issues may be important to consider when choosing surgical procedures for patients with renal tumors.

Multidisciplinary rehabilitation in women following breast cancer treatment: A randomized controlled trial

To assess the effectiveness of a multidisciplinary ambulatory rehabilitation programme for women following definitive breast cancer treatment in an Australian community cohort. Eighty-five women in the community randomized to a treatment group (n = 43) for individualized high-intensity programme, or a control group (n = 42) comprising usual activity. The primary outcome Depression Anxiety Stress Scale (DASS) scale measured restriction in participation. Secondary measures included Perceived Impact Problem Profile (PIPP) and Cancer Rehabilitation Evaluation System Short-Form (CARES-SF); and Functional Independence Measure (FIM) motor subscale for activity limitation. Assessments were at baseline and 4 months. Intention-to-treat analysis of data showed a significant difference between both groups in DASS Depression scores (p = 0.006) (moderate effect size, r > 0.3), PIPP Mobility (p = 0.05) and Participation (p = 0.04) scales, and CARES-SF Global score (p = 0.02) (small effect size, r < 0.3). The treatment group, compared with control group, showed significant improvement in the DASS Depression scores: 22/42 (52.4%) vs 12/37 (32.4%) (p = 0.02). No difference between groups was noted in the FIM scale. Rehabilitation can benefit participation in breast cancer survivors. Evidence for specific rehabilitation interventions is needed. Integrated cancer programmes allow opportunities to evaluate patients in various settings, but require outcome research to develop service models for survivorship issues.

A systematic review of the effectiveness of individualised survivorship care plans on quality of life of adult female breast cancer survivors.

Review Objective The objective of this review is to synthesize the best available evidence on the effectiveness of individualised survivor care plans as compared to usual care on quality of life for adult female breast cancer survivors. Types of participants This review will consider studies that include adult female breast cancer survivors, 18 years of age or older. A breast cancer survivor will be defined as one who has completed treatment for breast cancer and are considered cured, but who continue to experience the emotional and physical impact of the disease7. The concept of survivorship and quality of life will cover the physical, psychosocial, and sexual issues of cancer. Types of intervention/phenomena of interest This review will consider individualised survivorship care plans as the additional intervention provided to adult female with breast cancer survivors receiving the standard or routine care. The comparator: usual care. Usual care is standard or routine care for adult female breast cancer survivors. Outcome measures This review will consider studies that include the following outcome measures: survivor’s quality of life as it relates to physical, psychosocial, and sexual health. These outcome measures are critical components of survivorship care plans. Studies will be reviewed for evidence of standardised valid and reliable tools measuring quality of life in breast cancer survivors, such as the Long Term Quality of Life Breast Cancer (LTQOL-BC) scale36 and the Cancer Rehabilitation Evaluation System-Short Form (CARES-SF)37. The LTQOL-BC measures seven domains which include physical, sexual and cognitive function, body image, coping, social support, and anxiety. The CARES-SF instrument assesses the rehabilitative and quality of life needs of cancer patients. The tool is a questionnaire with five sub-scales measuring quality of life domains that include physical, psychosocial, medical interaction, marital, and sexual. Other tools identified in the studies will be appraised for their reliability and validity.

Quality of Life and Symptoms of Anxiety and Depression of Patients Receiving Cancer Chemotherapy

The overall survival gain of cancer chemotherapy is estimated to be small, and some claim that it rarely improves quality of life (QOL). The purpose of this population-based study was to describe QOL and symptoms of anxiety and depression, over time, in a group of Icelandic cancer patients receiving chemotherapy. Quality of life was measured with the Icelandic version of Cancer Rehabilitation Evaluation System, Short Form (CARES-SF), and symptoms of anxiety and depression, with the Icelandic version of Hospital Anxiety and Depression Scale (HADS). Enrolled into the study were 144 patients, 90 women and 54 men; mean (SD) age was 55 (12.1) years. Although QOL was found relatively good during the period of chemotherapy, it was significantly worse after 3 and 6 months compared to baseline. Quality of life was found worst in the sexual and physical domains. At all time points, a significant association was found between symptoms of anxiety and depression and QOL with those reporting symptoms of either anxiety or depression experiencing worse QOL. The good QOL found during the period of chemotherapy is a positive finding. The results, however, call for an intense assessment, over time, of physical symptoms, anxiety, and depression, as well as sexuality issues.

Impact of a Peer-Delivered Telephone Intervention for Women Experiencing a Breast Cancer Recurrence

A first breast cancer recurrence creates considerable distress, yet few psychosocial interventions directed at this population have been reported. The Southwest Oncology Group conducted a phase III randomized trial to evaluate the effectiveness of a brief telephone intervention. Three hundred five women experiencing a first recurrence of breast cancer were randomly assigned to standard care or intervention. The intervention consisted of four to eight telephone calls delivered over a 1-month period. The calls were conducted by trained peer counselors at a breast cancer advocacy organization, the Y-ME National Breast Cancer Organization, and followed a standard curriculum. Psychosocial distress (Cancer Rehabilitation Evaluation System-Short Form [CARES-SF]) and depressive symptoms (Center for Epidemiologic Studies Depression Scale [CES-D]) outcomes were assessed at baseline and 3 and 6 months. The 3-month assessment was the primary end point and is the focus of this article. Analysis revealed no differences in distress or depressive symptoms at 3 months between the intervention and control groups; at 3 months, 70% of control patients and 66% of intervention patients reported psychosocial distress, and 40% of control patients and 47% of intervention patients exhibited depressive symptoms. Telephone peer counseling did not lead to better psychosocial outcomes. The persistent distress in these women supports the urgent need for the development and testing of more intensive or different supportive interventions for this group of patients.

IRT health outcomes data analysis project: an overview and summary

In June 2004, the National Cancer Institute and the Drug Information Association co-sponsored the conference, "Improving the Measurement of Health Outcomes through the Applications of Item Response Theory (IRT) Modeling: Exploration of Item Banks and Computer-Adaptive Assessment." A component of the conference was presentation of a psychometric and content analysis of a secondary dataset. A thorough psychometric and content analysis was conducted of two primary domains within a cancer health-related quality of life (HRQOL) dataset. HRQOL scales were evaluated using factor analysis for categorical data, IRT modeling, and differential item functioning analyses. In addition, computerized adaptive administration of HRQOL item banks was simulated, and various IRT models were applied and compared. The original data were collected as part of the NCI-funded Quality of Life Evaluation in Oncology (Q-Score) Project. A total of 1,714 patients with cancer or HIV/AIDS were recruited from 5 clinical sites. Items from 4 HRQOL instruments were evaluated: Cancer Rehabilitation Evaluation System-Short Form, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, Functional Assessment of Cancer Therapy and Medical Outcomes Study Short-Form Health Survey. Four lessons learned from the project are discussed: the importance of good developmental item banks, the ambiguity of model fit results, the limits of our knowledge regarding the practical implications of model misfit, and the importance in the measurement of HRQOL of construct definition. With respect to these lessons, areas for future research are suggested. The feasibility of developing item banks for broad definitions of health is discussed.

Older Breast Cancer Survivors: Factors Associated With Change in Emotional Well-Being

During the 5 years after primary breast cancer diagnosis for women 65 years old, we examined factors associated with change in emotional well-being. We identified women diagnosed with primary breast cancer and selected women with stage I to IIIa disease, age 65 years, and for whom we had permission from the attending physician to contact. Data were collected during 5 years of follow-up from consenting patients' medical records and telephone interviews with patients. Outcomes included a five-question Mental Health Inventory general measure of emotional health (MHI5) and two cancer-specific measures: breast cancer-specific emotional health (BCSEH) and Cancer Rehabilitation Evaluation System-Short Form (CARES-SF) Psychosocial Summary Scale. During 5 years of follow-up of older breast cancer survivors, 57% had less than a +/- 10-point change in MHI5, 38% had less than a +/- 10-point change in BCSEH, and 52% had less than a +/- 10-point change in CARES-SF Psychosocial Summary Scale. Women with less than 12 years of education were at greatest risk for having negative changes in both general and breast cancer-specific emotional health. Moreover, we also found that women who perceived themselves as never being cured had greater negative changes in all outcomes. Conversely, those who had better physical function, emotional social support, and positive ratings regarding the quality of medical interactions at baseline were less likely to have poor emotional health during follow-up. For the majority of older breast cancer survivors, cancer-specific well-being and general emotional health do not change substantially after a breast cancer diagnosis. Among those in whom change occurs, risk factors are similar and may be related to other age-related diseases.

Standardized versus open‐ended assessment of psychosocial and medical concerns among African American breast cancer patients

Standardized quality of life measures have been developed and used primarily with Caucasian and middle-class cancer patients. This study assessed the ability of several widely used standardized measures to capture the concerns and problems of 89 African American breast cancer patients. Concerns and problems were assessed using both an open-ended format and standardized measures. The degree of overlap in responses from these two formats was examined. The most frequently reported problems in the open-ended format included physical (43%), financial (40%), and worry about others (30%). Overall, standardized measures had significant overlap with open-ended concerns and problems. The Cancer Rehabilitation Evaluation System-Short Form subscales/items were associated with corresponding open-ended physical, financial, and social problems (R2 change = 0.07-0.16, p's < or = 0.02), the Interpersonal Support Evaluation List-Short Form was associated with open-ended social problems (R2 change = 0.11, p = 0.004), and the Mental Health Inventory was associated with open-ended psychological distress problems (R2 change = 0.08, p = 0.01). One category of open-ended problems, worry about others, was not captured by standardized measures. With the exception of associations between open-ended physical problems and psychological distress measures, there were few significant correlations between standardized measures and dissimilar problem categories. These findings suggest that the standardized measures in this study reflected the concerns and problems of African American breast cancer patients. Additional studies are needed to evaluate the utility of other widely used standardized measures that have not been developed or standardized among non-white samples.

Development and evaluation of an instrument to assess social difficulties in routine oncology practice

To develop and preliminarily evaluate a Social Difficulties Inventory (SDI) for use in oncology practice. Item generation from patients (n = 96), staff (n = 49) and the literature. Questions constructed and pre-tested (n = 42) resulting in a 22-item questionnaire. Psychometric evaluation (n = 271) assessed frequency of endorsement, factor structure, summated scales and construct validity followed by randomisation to criterion validity or test-retest arms. Items met preset frequency of endorsement criteria. Factor analysis revealed a four-factor structure, three clearly definable, (1) Physical ability, (2) Providing for the family and (3) Contact with others, explaining 45.8% variance. Summated scales developed from these demonstrated good reliability (Cronbach's alpha > 0.7) and were used to test and confirmed construct validity. Several comparators from the Life Events and Difficulties Schedule (LEDS) and Cancer Rehabilitation Evaluation System Short Form (CARES-SF) tested criterion validity and majority agreements were moderate to good. Test-retest reliability was good with most kappa values > 0.6. One item was eliminated resulting in a 21-item questionnaire. The SDI is relevant and easy to understand. Initial psychometric evaluation was encouraging. Ongoing work to evaluate the clinical meaning and utility of the instrument and to examine the relationships between SDI scores and clinical outcomes will provide guidance about its usefulness as an assessment tool in routine oncology practice.

Breast cancer treatment in older women: does getting what you want improve your long-term body image and mental health?

Little is known about the impact of surgical treatment on body image and health outcomes in older breast cancer patients. The purpose of this article is to evaluate whether concordance between treatment received and treatment preferences predicts posttreatment body image and whether body image, in turn, affects mental health in older women with breast cancer 2 years after treatment. A longitudinal cohort of 563 women who were 67 years old or older and who had stages I and II breast cancer were surveyed by telephone at 3, 12, and 24 months after surgery. All women were clinically eligible for breast conservation. Body image was measured using questions adapted from the Cancer Rehabilitation Evaluation System-Short Form, and mental health was evaluated using a Medical Outcomes Study subscale. Body image was an important factor in treatment decisions for 31% of women. Women who received breast conservation had better body image 2 years after treatment than women who had mastectomies (P <.0001). Women who preferred breast conservation but received mastectomy had the poorest body image. Using generalized estimating equations, we found that body image, in turn, predicted 2-year mental health. Body image is important for many older women, and receiving treatment consistent with preferences about appearance was important in long-term mental health outcomes. Health professionals should elicit preferences about appearance from women and provide treatment choices in concordance with these preferences. Enhancing shared decision making has the potential to improve mental health in older breast cancer survivors.

The association of treatment-related symptoms with quality-of-life outcomes for localized prostate carcinoma patients.

Most studies of treatment outcomes in men with localized prostate carcinoma have emphasized sexual, urinary, and bowel symptoms with the assumption that they have an impact on quality of life. However, very few studies have directly examined and compared the impact of these symptoms on overall and cancer specific quality of life. The authors examined 783 incident cases of localized prostate carcinoma, diagnosed from 1993 to 1998, and 1928 age-matched healthy controls from the Health Professionals Follow-Up Study cohort. Information on frequency of ejaculation and urinary symptoms were collected before cancer diagnosis. After cancer diagnosis, the authors mailed a questionnaire including the Medical Outcomes Study Short Form-36 Health Status Survey (SF-36), the Cancer Rehabilitation Evaluation System-Short Form (CARES-SF), and the University of California at Los Angeles Prostate Cancer Index in 1998. Cases had slightly lower scores on most of the SF-36 scales and reported much more bother from sexual, urinary, and bowel symptoms compared with healthy controls. Among prostate carcinoma patients, bowel symptoms had the greatest negative impact on quality of life, followed by sexual and urinary symptoms. As expected, treatment-related symptoms were associated with the physical domains of quality of life, but psychosocial domains were just as strongly affected. Patients and health care providers need to consider the potential mental quality-of-life impacts associated with prostate carcinoma treatment symptoms when making treatment decisions. Even after patients have completed cancer treatment, significant health impairments may remain. Health care providers should continue to address the mental and physical well-being of prostate carcinoma patients in follow-up care.