Considerations for Evaluating Older Adults with Cancer for Depression: A Qualitative Survey of Experts.

OBJECTIVES: The objective of this study was to engage national experts in geriatric psychiatry and oncology in qualitative interviews to develop consensus regarding how older adult cancer survivors (OACS) experience depressive symptoms, and how best to assess OACs for depression. METHODS: Expert clinicians in geriatric oncology disciplines were interviewed about approaches to assessing depression in OACs. Interviews were audio-recorded and transcribed, and conducted until thematic saturation was achieved. Thematic Content Analysis was utilized to identify key themes. RESULTS: Experts (N = 8) were board certified geriatric psychiatrists and oncologists with specialization in geriatric medicine. Two conceptual domains were identified: Key indicators of depression in OACs (e.g. anhedonia; loss of meaning and purpose; loneliness and social withdrawal) and unique considerations for depression assessment in OACs (e.g. alternative phrasing to "depression," disentangling mood and cancer or treatment-related side effects). CONCLUSIONS: The approaches identified tended to depart from traditional diagnostic criteria for depression. CLINICAL IMPLICATIONS: Results provide additional insight into the limitations of existing depression measures for OACs. The themes and practices identified in the present study suggest that a revised measure of depression for OACs may be useful. Future research will continue to shed light on best practices for depression assessment in OACs.

On taking up space: a qualitative inquiry of depression in older adults with cancer.

OBJECTIVE: To identify the phenomenology of depression in older adults with cancer (OACs) in order to improve the accuracy of depression screening for this population. METHOD: Inclusion criteria were: ≥70 years old, history of cancer, no cognitive impairment or severe psychopathology. Participants completed a demographic questionnaire, a diagnostic interview, and a qualitative interview. Using a Thematic Content Analysis framework, critical themes, passages, and phrases used by patients to describe their perceptions of depression and how it is experienced were identified. Particular attention was paid to divergences between depressed and non-depressed participants. RESULTS: Among 26 OACs (13 depressed, 13 non-depressed), qualitative analyses revealed four major themes indicative of depression (i.e. anhedonia, reduction in social relationships/loneliness, lack of meaning and purpose, lack of usefulness/feeling like a burden) and four minor themes (i.e. attitude towards treatment, mood, regret/guilt, physical symptoms/limitations). Themes of adaptation and acceptance of symptoms also emerged. CONCLUSIONS: Of the eight themes identified, only two overlap with DSM criteria. This supports the need to develop assessment methods of depression in OACs that are less reliant on DSM criteria and distinct from existing measures. This may improve the ability to identify depression in this population.

Exploring the caregiver's experience in an innovative homebound hematopoietic stem cell transplantation program.

OBJECTIVE: Home care for hematopoietic stem cell transplants (HSCTs), an alternative to traditional inpatient or outpatient recovery programs, is safe and feasible but may place greater demand on full-time caregivers. The goal of this study was to characterize the experiences of caregivers in a newly piloted homebound HSCT program as a means of identifying unmet needs and ensuring adequate support. METHOD: A qualitative approach was utilized. Participants created self-recorded video diaries guided by open-ended prompts at designated time points throughout recovery and participated in a single follow-up interview within four weeks post-discharge. Diaries and interviews were transcribed, analyzed, and coded to identify recurrent ideas and themes. RESULTS: Data were collected from 12 caregivers of homebound HSCT patients. Thematic content analysis yielded four themes: facilitators (external support, sense of normalcy, and patient wellness), challenges (difficulties with transplant care instructions, managing the patient's physical and emotional health, and caregiver psychological distress), roles in recovery (caregiving responsibilities), and analysis of homebound experience (positive outcomes and suggestions for improvement). SIGNIFICANCE OF RESULTS: Caregivers perceived the homebound program as offering high-quality medical care in a setting that provided a sense of normalcy, privacy, and greater level of oversight. Unmet needs included lacking preparedness in completing nursing responsibilities and handling caregiver and patient distress. While the homebound program was preferred to routine hospital care, psychotherapeutic support and programming to improve caregiver preparedness in a homebound HSCT recovery program is indicated.

Feasibility and acceptability of using an IVRS to assess decision making about sun protection.

OBJECTIVE: We developed an interactive voice response system (IVRS), an automated telephone survey technology, to assess real-time decision making about sun protection. We examined the feasibility and acceptability of IVRS in this electronic health (eHealth) context. METHODS: Melanoma patients who underwent surgery referred their first-degree relatives (FDRs) for participation. Eligible FDRs were contacted twice daily (12:30 pm; 5:00 pm) over 14 consecutive days via IVRS to complete a survey about their sun protection behaviors and decisions about those behaviors. RESULTS: Of the 81 eligible FDRs, 69 (85%) consented to the study, and 53 (77%) completed the study. We assessed adherence with the IVRS via the number and pattern of missing survey items across all answered IVRS calls. About 80% of scheduled IVRS calls were answered (1316/1652). Most surveys (93%) of the IVRS-answered calls were completed. To examine acceptability, we analyzed the program satisfaction survey data collected at the end of the study. Most participants viewed the IVRS to be highly acceptable and easy to use. CONCLUSIONS: These findings illustrate that use of real-time IVRS data collection regarding sun protection decision making is feasible and acceptable to higher-risk research participants and could thus be used with time and location-sensitive eHealth support to enhance sun protection decision making.

A mixed methods analysis of patients' advance care planning values in outpatient oncology: Person-Centered Oncologic Care and Choices (P-COCC).

PURPOSE: Person-Centered Oncologic Care and Choices (P-COCC) combines an advance care planning (ACP) value-focused patient interview with a care goal video decision aid. Our randomized study showed that P-COCC was acceptable but increased participant distress, compared with video-alone and usual care study arms. This mixed methods approach explores the ACP values in the P-COCC arm and their relationship to the distress phenomenon. METHODS: Qualitative thematic analysis of the 46 audio-recorded P-COCC interview transcripts with advanced gastrointestinal cancer patients was performed by multiple reviewers. Quantitative (Likert scale) changes in ACP values were compared across study arms. ACP themes and value change were analyzed in participants with increased distress. RESULTS: Transcript analysis resulted in thematic saturation and identified eight distinct themes on ACP values relating to end-of-life wishes, communication needs, and psychosocial supports. Of 98 participants (33 P-COCC, 43 videos, 22 usual care) who completed the change in value measure, there was no difference detected with P-COCC compared with either video (p = 0.052) or usual care (p = 0.105) arms alone, but P-COCC led to a frequency distribution of more change in personal values compared with the other study arms combined (p = 0.043). Among the subset of P-COCC participants with increased distress, there was no statistical relationship with change in values. CONCLUSIONS: The ACP paradigm P-COCC both informs and supports patients in individualized, value-based decision-making. Distress is not associated with changes in ACP values and may be a necessary, at least transient, byproduct of discussing sensitive but pertinent topics about end-of-life medical care.

Treatment decision making in early-stage papillary thyroid cancer.

OBJECTIVE: The purpose of this study was to develop an in-depth understanding of papillary microcarcinoma (PMC) patients' decision-making process when offered options of surgery and active surveillance. METHODS: Fifteen PMC patients and 6 caregivers participated in either a focus group or individual interview. Focus groups were segmented by patients' treatment choice. Primary themes were identified in transcripts using thematic text analysis. RESULTS: Four themes emerged from the surgery subsample: (1) Decision to undergo thyroidectomy quickly and with a sense of urgency; (2) Perception of PMC as a potentially life-threatening disease; (3) Fear of disease progression and unremitting uncertainty with active surveillance; and (4) Surgery as a means of control and potential cure. Three themes emerged from the active surveillance subsample: (1) View of PMC as a common, indolent, and low-risk disease; (2) Concerns about adjusting to life without a thyroid and becoming reliant on hormone replacement medication; and (3) Openness to reconsidering surgery over the long run. Two themes were identified that were shared by participants from both subsamples: (1) Deep level of trust and confidence in physician and cancer center; and (2) Use of physician and internet as primary sources of disease and treatment-related information. CONCLUSIONS: Several factors influenced participants' treatment choice, with similarities and differences noted between surgery and active surveillance subsamples. Many of the emergent themes are consistent with research on decision making among localized prostate cancer patients. Findings suggest that participants from both PMC treatment subsamples are motivated to reduce illness and treatment-related uncertainty.

Patient perspectives on ipilimumab across the melanoma treatment trajectory.

PURPOSE: Ipilimumab was the first FDA-approved agent for advanced melanoma to improve survival and represents a paradigm shift in melanoma and cancer treatment. Its unique toxicity profile and kinetics of treatment response raise novel patient education challenges. We assessed patient perceptions of ipilimumab therapy across the treatment trajectory. METHODS: Four patient cohorts were assessed at different time points relative to treatment initiation: (1) prior to initiation of ipilimumab (n = 10), (2) at weeks 10-12 before restaging studies (n = 11), (3) at week 12 following restaging studies indicating progression of disease (n = 10), and (4) at week 12 following restaging studies indicating either a radiographic response or disease stability (n = 10). Patients participated in a semistructured qualitative interview to assess their experiences with ipilimumab. Quality of life was assessed via the Functional Assessment of Cancer Therapy-General and its Melanoma-specific module. RESULTS: Perceived quality of life was comparable across cohorts, and a majority of the sample understood side effects from ipilimumab and the potential for a delayed treatment response. Patients without progression of disease following restaging studies at week 12 held more positive views regarding ipilimumab compared to patients who had progressed. CONCLUSION: Patients generally regarded ipilimumab positively despite the risk of unique toxicities and potential for delayed therapeutic responses; however, those with progression expressed uncertainty regarding whether taking ipilimumab was worthwhile. Physician communication practices and patient education regarding realistic expectations for therapeutic benefit as well as unique toxicities associated with ipilimumab should be developed so that patients can better understand the possible outcomes from treatment.

Communication between oncologists and lymphoma survivors during follow-up consultations: A qualitative analysis.

Cancer survivors often experience both short- and long-term challenges as a result of their cancer treatment. Many patients report feeling "lost in transition" following cancer treatment. The oncologist plays a key role in helping the patient to transition to survivorship. The purpose of this paper is to provide a descriptive understanding of the clinical care delivered during follow-up visits for lymphoma patients transitioning from active therapy into survivorship. We used thematic text analysis to identify themes in transcripts of audio recordings of 21 physicians and their patients in follow-up visits within 3 years of completing lymphoma treatment. Conversations between oncologists and patients during follow-up visits addressed a variety of themes, including specific health concerns, follow-up care, health promotion, prior treatment and test results, overall health status, emotional communication and affective tone, post-treatment rehabilitation, discussions occurring in the patient's physical examination, and social issues. However, the frequency with which these themes were discussed varied. In addition, there did not appear to be a consistent framework for these visits. The varied nature of the follow-up visits analyzed in this study suggests the need for increased structure in survivorship-care consultations.

A Qualitative Exploration of Latinos' Perceptions About Skin Cancer: the Role of Gender and Linguistic Acculturation.

Latinos have the highest rate of skin cancers among U.S. minorities. Despite a rising incidence of melanoma-the deadliest form of skin cancer-and greater disease burden, Latinos tend to have poor awareness of skin cancer risk factors which may inhibit preventive action. We expanded on prior work by qualitatively examining potential moderators (i.e., gender, acculturation) of skin cancer perceptions among Latinos from El Barrio in Harlem, New York City. Four focus groups stratified by language (English/Spanish) and gender were conducted. Discussions were recorded, transcribed, and coded using thematic analysis. Thirty-eight self-identified Latinos (32 % male) participated. Across groups, median age was 35 years; 50 % completed

Patient perspectives and preferences for communication of medical imaging risks in a cancer care setting.

PURPOSE: To identify opportunities for improving patient-centered communication about diagnostic imaging tests that involve the use of radiation in a cancer care setting. MATERIALS AND METHODS: Institutional review board approval and informed consent were obtained for this HIPAA-compliant study. Patient knowledge, information sources, and communication preferences were assessed in six focus groups during 2012. The groups consisted of patients undergoing treatment for metastatic colorectal carcinoma, women treated within the past 6 months for early-stage breast carcinoma, men undergoing surveillance after testicular cancer treatment, parents of patients treated for stage I-III neuroblastoma, patients in a thoracic oncology survivorship program, and participants in a lung cancer screening program. A multidisciplinary research team performed thematic content analysis of focus group transcripts. High-level findings were summarized during consensus conferences. RESULTS: Although they were aware of the long-term risk of cancer from exposure to ionizing radiation, most participants reported that their health care provider did not initiate discussion about benefits and risks of radiation from imaging tests. Most patients obtained information by means of self-directed internet searches. Participants expressed gratitude for tests ("That CT saved my daughter's life," "I'd rather have the radiation dosage than being opened up"), yet they expressed concern about having to initiate discussions ("If you don't ask, nobody is going to tell you anything") and the desire to be offered information concerning the rationale for ordering specific imaging examinations, intervals for follow-up imaging, and testing alternatives. Participants believed that such information should be available routinely and that conversation with their personal physician or endorsed, readily available reference materials were ideal methods for information exchange. Understanding imaging radiation risks and active participation in decision making about imaging were especially important to cancer survivors. CONCLUSION: A substantial gap exists between patient expectations and current practices for providing information about medical imaging tests that involve the use of radiation.

Men's experience with penile rehabilitation following radical prostatectomy: a qualitative study with the goal of informing a therapeutic intervention.

BACKGROUND: Erectile rehabilitation (ER) following radical prostatectomy (RP) is considered an essential component to help men regain erectile functioning; however, many men have difficulty adhering to this type of program. This qualitative study explored men's experience with ER, erectile dysfunction (ED), and ED treatments to inform a psychological intervention designed to help men adhere to ER post-RP. METHODS: Thirty men, 1-to-3-years post-RP, who took part in an ER program, participated in one of four focus groups. Thematic analysis was used to identify the primary themes. RESULTS: Average age was 59 years (standard deviation = 7); mean time since surgery was 26 months (standard deviation = 6). Six primary themes emerged: (1) frustration with the lack of information about postsurgery ED; (2) negative emotional impact of ED and avoidance of sexual situations; (3) negative emotional experience with penile injections and barriers leading to avoidance; (4) the benefit of focusing on the long-term advantage of ER versus short-term anxiety; (5) using humor to help cope; and (6) the benefit of support from partners and peers. CONCLUSIONS: Men's frustration surrounding ED can lead to avoidance of sexual situations and ED treatments, which negatively impact men's adherence to an ER program. The theoretical construct of acceptance and commitment therapy was used to place the themes into a framework to conceptualize the mechanisms underlying both avoidance and adherence in this population. As such, acceptance and commitment therapy has the potential to serve as a conceptual underpinning of a psychological intervention to help men reduce avoidance to penile injections and adhere to an ER program.

Melanoma survivors: health behaviors, surveillance, psychosocial factors, and family concerns.

BACKGROUND: Little research has been conducted on melanoma survivors and important opportunities exist for research in this understudied population. The study objective was to examine experiences of melanoma survivors regarding sun protection, surveillance practices, psychosocial and family concerns using focus groups. METHODS: We identified patients (≥ 18 years) treated at Memorial Sloan-Kettering Cancer Center (USA) during 1996-2005 with invasive primary cutaneous melanoma, stages I-III. We stratified focus groups by age (<50 vs ≥ 50 years) and years since diagnosis (1 to <5 years vs 5-10 years). We performed qualitative thematic text analysis, which involved independent data review by multiple analysts (n = 2) followed by interpretation of key findings via consensus work. RESULTS: Forty-eight survivors composed the final sample. Most did not conduct routine skin self-examinations. Survivors became more conscious of sun exposure and expanded their sun protection; some experienced anxiety if caught unprotected in the sun. Survivors were aware of the increased melanoma risk for family members, yet many did not discuss risk reduction. Melanoma diagnosis elevated the importance of retaining health insurance and purchasing life insurance for younger survivors. We did not identify significance difference between those diagnosed more or less recently. CONCLUSIONS: We identified areas of high priority to melanoma survivors: skin self-examination, anxiety associated with sun exposure, familial risk communication, and maintaining health insurance benefits. The implications for cancer survivors are that these behavioral data will help to design health promotion and prevention programs that are tailored to melanoma survivors' risk status.

A qualitative study to explore psychological distress and illness burden associated with opioid-induced constipation in cancer patients with advanced disease.

BACKGROUND: Constipation affects many patients receiving long-term opioid therapy for cancer pain. Little is known about the nature of psychological distress and the burden associated with this problem. This information may inform the development of effective treatment strategies and ameliorate distress. AIM: The objective was to use qualitative research methods to better understand psychological distress and the burden associated with opioid-induced constipation and its treatment in advanced cancer patients. DESIGN: In this qualitative study, semi-structured interviews explored perceptions of psychological distress and burden from opioid-induced constipation. Interviews were analyzed using a thematic content analysis approach involving descriptive and interpretive coding and identification of recurring themes. SETTING/PARTICIPANTS: Twelve advanced cancer patients with opioid-induced constipation were recruited from a large urban hospital. RESULTS: Patients experienced various types of negative affect and cognitions associated with opioid-induced constipation. Analyses indicated three major themes: (1) irrational thoughts and educational needs; (2) psychological distress from constipation and (3) the effects of constipation on the decision to use opioid analgesics. Irrational thoughts and educational needs included beliefs that nutrition could improve constipation, the supposition that constipation indicated deteriorating health, and catastrophic beliefs. Psychological distress included depressive symptoms and anticipatory anxiety related to constipation. Decision-making revealed cognitive dissonance about using opioids and conflicting preferences about continuing use. CONCLUSIONS: Future investigation of the multiple components of cognitive and affective burden from opioid-induced constipation is warranted. Understanding the varied nature of this burden may improve clinical recognition and assessment and promote more intensive management consistent with the distress it produces.

Men's experience with sexual dysfunction post-rectal cancer treatment: a qualitative study.

In an effort to address reports from men that their sex life is worse after treatment for rectal cancer, this qualitative study was designed to better understand their experience with sexual dysfunction following rectal cancer treatment, thus providing information on the adaptation of a psycho-educational sexual health intervention for male rectal cancer survivors and simultaneously investigating barriers and promoters that would influence their participation in a psycho-educational sexual health intervention. Thirteen male rectal cancer survivors who were treated at Memorial Sloan-Kettering Cancer Center (MSKCC) for rectal cancer participated (median time post-treatment was 6.4 years). Six survivors participated in individual semi-structured phone interviews, and seven others took part in focus groups. We performed standard procedures of qualitative thematic text analysis, which involved independent review of interview and focus group transcripts by several analysts followed by consensus meetings to identify key themes. Participants reported bowel dysfunction (N = 13, or 100%) and erectile dysfunction (N = 12, or 92%) as chief complaints. The participants thought a psychoeducational sexual health intervention post-surgery would be helpful because it would provide educational information regarding the etiology of their problems and treatments to improve their sexual health (N = 8, or 62%). Most participants' primary concern immediately after treatment was surviving their disease; improving sexual functioning seemed to become more important over time. Barriers to potentially participating in a psycho-educational sexual health intervention included geographical distance from MSKCC (N = 3, or 3/13) and the risk of embarrassment when discussing sexual issues (N = 5, or 5/13). Men reported that a psycho-educational sexual health intervention would be helpful to improve their sexual functioning post-treatment. Discussion of bowel issues and logistical concerns gave information on the psycho-educational sexual health intervention.

Factors associated with inconsistent sun protection in first-degree relatives of melanoma survivors.

First-degree relatives (FDRs) of melanoma survivors are at heightened risk for developing melanoma, but use sun protection inconsistently. To develop appropriate interventions, in this article we identify factors related to sun protection inconsistency in melanoma FDRs using ethnographic decision tree modeling. We conducted in-home interviews with 25 melanoma FDRs balanced across gender and sunbathing attitudes and identified factors related to daily decision making about use of sunscreen, shade seeking, hats, and clothing. Results indicated primary facilitators for sun protection involved water settings and sunny weather. Physical activities such as exercise served to promote as well as inhibit sun protection. If participants anticipated shade cover, they tended to forgo other sun protection. The use of hats and clothing was often dictated by nonsun-protection goals. Understanding factors related to inconsistent sun protection with detail and nuance is an important prerequisite to interventions aimed to improve sun-protection maintenance in this population.

Enhancing decision making about participation in cancer clinical trials: development of a question prompt list.

PURPOSE: Slow accrual to cancer clinical trials impedes the progress of effective new cancer treatments. Poor physician-patient communication has been identified as a key contributor to low trial accrual. Question prompt lists (QPLs) have demonstrated a significant promise in facilitating communication in general, surgical, and palliative oncology settings. These simple patient interventions have not been tested in the oncology clinical trial setting. We aimed to develop a targeted QPL for clinical trials (QPL-CT). METHOD: Lung, breast, and prostate cancer patients who either had (trial experienced) or had not (trial naive) participated in a clinical trial were invited to join focus groups to help develop and explore the acceptability of a QPL-CT. Focus groups were audio-recorded and transcribed. A research team, including a qualitative data expert, analyzed these data to explore patients' decision-making processes and views about the utility of the QPL-CT prompt to aid in trial decision making. RESULTS: Decision making was influenced by the outcome of patients' comparative assessment of perceived risks versus benefits of a trial, and the level of trust patients had in their doctors' recommendation about the trial. Severity of a patient's disease influenced trial decision making only for trial-naive patients. CONCLUSION: Although patients were likely to prefer a paternalistic decision-making style, they expressed valuation of the QPL as an aid to decision making. QPL-CT utility extended beyond the actual consultation to include roles both before and after the clinical trial discussion.

Qualitative evaluation of a new tobacco cessation training curriculum for patient navigators.

Treatments for tobacco dependence exist but are underutilized, particularly among low-income and minority smokers. Patient navigation has been shown to help patients overcome barriers to quality care. In preparation for testing the feasibility of integrating tobacco cessation patient navigation into primary care, this paper describes the development and qualitative evaluation of a new curriculum for training patient navigators to address cessation treatment barriers faced by low-income, minority smokers who are advised to quit by their physicians. Thematic text analysis of transcripts obtained from focus groups with experienced patient navigators (n = 19) was conducted. Participants endorsed patient navigation as a relevant strategy for addressing tobacco cessation treatment barriers and made several recommendations regarding the knowledge, core competencies, and skills needed to conduct tobacco cessation patient navigation. This curriculum could be used by existing patient navigation training centers or made available as a self-guided continuing education program for experienced navigators who wish to expand their navigation interventions to include a tobacco cessation focus.

A qualitative study of adolescent and young adult cancer survivors' perceptions of family and peer support.

This qualitative study examined adolescent and young adult survivors' perceptions of support from family and peers. A total of 26 survivors, aged 16-24 years, who had been diagnosed with cancer between the ages of 14 and 18, participated in semi-structured interviews. Three themes emerged for support: practical support, emotional support, and new sense of closeness. For lack of support, two themes emerged: absence during treatment and lack of understanding about appearance changes. These findings emphasize the perceived importance of family and peer support throughout adolescent and young adults' cancer trajectories and indicate a need for interventions to help adolescent and young adult develop and maintain support networks throughout treatment and survivorship.