From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies

Purpose

The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies.

Methods

Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes.

Results

Health-care-related themes described CRC survivors’ experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms.

Conclusions

Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL.

Structured abstract

The current literature in CRC survivorship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.     

南海市造口病人生活质量调查研究

目的：提高南海市造口病人生活质量。方法：发放自行设计的调查表，内容包括造口病人个人情况，造口及营养情况，造口病人社交及家庭生活情况，调查了南海市160例造口病人，逐一上门访视，召开联谊会。结果：113例占70．6％造口病人基本能自理造口；144例占90％家庭能接受造口病人，相处较好；104例占65％有造口周围皮肤问题；98例占61．2％对造口用品认识较少；131例占81．9％营养不均衡。已婚142例，其中70例配偶健在，只有20例有夫妻性生活；69例占43．1％参加社交活动。结论：160例造口病人生活质量较低，必须加强镇（区）社区护士对造口护理知识培训，定期访视并适时组织造口病人联谊活动，提供社会支持，才能提高造口病人生活质量。     

PS1-09: Comparing the Greatest Challenges of Long-Term Rectal Cancer Survivors with Anastomosis Versus Ostomy

Background Patients surgically treated for rectal cancer receive either an intestinal ostomy (externalization of the bowel to the abdominal wall) or, more frequently, an anastomosis (reconnection) of the rectum. While the challenges of intestinal ostomies have been previously described by this research team, much less is known about the long-term challenges of living with an anastomosis. Understanding the challenges of long-term rectal cancer survivors with both types of surgeries is important for informing and improving current practice. Methods We mailed our survey to 1000 long-term (at least 5 years post-diagnosis) rectal cancer survivors in KP Northern California and KP Northwest during 2010-2011. Our overall response rate was 57.7% (577/1000). The survey contained an open-ended question that asked respondents to write about the greatest challenge they experienced after their cancer surgery. Seventy-three percent of respondents provided a response to this "greatest challenge" question. Responses were analyzed qualitatively to compare the challenges reported by patients with anastomosis vs. ostomy. Results Challenges related to managing bowel function and output were found in both groups. Ostomy patients reported challenges to managing ostomy equipment that were unique to their condition-ostomy appliance failures, skin breakdown around the ostomy, and finding suitable places to empty, clean, and reconnect their appliance. Other notable differences in the greatest challenges among ostomy and anastomosis patients included: patients with an ostomy reported a range of psychosocial challenges relating to depression, shame, stigma, and post-operative psychological trauma about having an ostomy and such psychosocial impacts were notably absent among anastomosis patients; patients with ostomies reported regret about having an ostomy, but patients with anastomosis did not report regret about the surgery they received; and, anastomosis patients mentioned more challenges from radiation after effects, including pain, fistulae, and strictures. Discussion Our findings about rectal cancer survivors with ostomies mirror previously published reports. Even in the face of impaired bowel function, rectal cancer survivors with anastomoses express little psychological distress or regret about treatment choice. The lasting effects of radiation therapy, however, are of special concern to this group.     

The meanings and correlates of spirituality: suggestions from an exploratory survey of experts

There has been an increasing interest in spirituality among health care professionals over the last several decades. Specialists in the areas of trauma, grief, and death and dying have been among those who have shown particular interest in religious and spiritual issues. Recent efforts to distinguish religiosity from spirituality have stimulated inquiries into the changing meanings of these dimensions. Drawing on prior and parallel works, the authors created a questionnaire and asked for responses to it from convenience samples of experts in death studies (n = 22) and spiritual studies (n = 13). Our findings are suggestive of possible lines of convergence and divergence. Both groups considered themselves to be spiritual but not religious, and there was consensus that the meaning of the term spirituality is currently changing. There was also general agreement that spiritual experiences are meaningful learning opportunities and that spiritual individuals tend to be more hopeful and to experience more meaning or purpose in life than their nonspiritual peers. The themes most strongly associated with spirituality in both groups were charity, community or connectedness, compassion, forgiveness, hope, meaning, and morality. Future research should be directed toward clarifying what people mean by "spiritual" and how they experience and express this dimension of their lives.     

Sexual health and quality of life among male veterans with intestinal ostomies

PURPOSE: This secondary analysis was conducted to expand our understanding of the challenges men with ostomies face regarding intimate relationships and sexual functioning. We examined quantitative and qualitative data to examine sexual functioning, intimate relationships, and health-related quality of life (HR-QOL) among military veterans who are living with an intestinal stoma. SETTING: Three Veterans Health Administration sites. SAMPLE: Four hundred eighty-one male veterans. METHODS: Case-control, mixed-methods design; cases were those who had ostomies for at least 2 months, and controls had a similar major intestinal surgical procedure that did not result in an ostomy. Quantitative and qualitative data on sexual functioning, relationships, and other dimensions of HR-QOL were collected using the modified City of Hope Quality of Life-Ostomy questionnaire. RESULTS: The overall response rate was 49%. Prevalence of erectile dysfunction was significantly higher among ostomates compared with controls (P < .001). Although a greater proportion of veterans with ostomies reported being sexually active before surgery compared with controls (P < .001), the proportion of men who had resumed sexual activity after surgery is significantly lower among the ostomy group (P = .015). Compared with veterans with ostomies who did not resume sexual activity after surgery, those who were sexually active reported a higher total HR-QOL score and higher scores on all 4 modified City of Hope Quality of Life-Ostomy dimensions (psychological, social, physical, and spiritual well-being). Veterans with ostomies who had resumed sexual activity after their ostomy also reported that their ostomy had caused significantly less interference with social activities, less isolation, less interference with their personal relationships, and less interference with their ability to be intimate. These men also reported less difficulty adjusting to the ostomy. Results of qualitative analyses showed that problems with intimacy and sexual function are among the greatest challenges faced by ostomates. CONCLUSION: Presence of an ostomy was associated with lower rates of sexual activity and higher erectile dysfunction. The lower rates of sexual activity and sexual satisfaction were related to the social and psychological dimensions of HR-QOL among men with ostomies. Interventions to address sexual concerns of male ostomates and their partners may prevent decrements to HR-QOL for these patients. IMPLICATIONS FOR PRACTICE: Results of the study have implications for the clinical nurse specialist role in supporting and educating patients with ostomies to minimize the negative impact of an intestinal ostomy on sexual health and HR-QOL. Implications also relate to the need to educate current and future nurses about the importance of assessing sexual health.     

Untreated peristomal skin complications among long-term colorectal cancer survivors with ostomies

This ethnography of family caregiving explored why peristomal skin complications are common and undertreated among colorectal cancer survivors with intestinal ostomies. Data were collected through in-depth interviews with 31 cancer survivors and their family caregivers, fieldwork, structured assessments, and medical records review, and analyzed with qualitative theme and matrix analyses. Survivors who received help changing the skin barrier around their stoma had fewer obstacles to detection and treatment of peristomal skin complications. Half of the survivors received unpaid help with ostomy care, and all such help came from spouses. Married couples who collaborated in ostomy care reported that having assistance in placing the ostomy appliance helped with preventing leaks, detecting skin changes, and modifying ostomy care routines. In addition, survivors who struggled to manage ostomy care independently reported more obstacles to alleviating and seeking treatment for skin problems. Oncology nurses can improve treatment of peristomal skin problems by asking patients and caregivers about ostomy care and skin problems, examining the peristomal area, and facilitating routine checkups with a wound, ostomy, and continence nurse.     

Integrative review of spirituality in African American breast cancer survivors.

This paper reports findings of an integrative review of the literature on spirituality in AA breast cancer survivors, isolates key spiritual themes, and recommends future research. Inclusion criteria are 1994 to 2004 research studies that included AA breast cancer survivors 18 years old and older. Content analysis was used to isolate spiritual themes and spiritual domains/dimensions. Seven studies resulted that used qualitative, quantitative, and mixed methods. Themes identified were spirituality provided the strength to cope; the need to care for others and receive care; beliefs that God is the healer and in control; God assists in decision-making; and closeness to God. Spiritual domains were beliefs, functions, and social support. Future research should explore the domains/dimensions and meanings of spirituality experienced by diverse groups ofAA breast cancer survivors. Culturally appropriate, evidence-based nursing care should include spiritually based interventions that acknowledge the significance of God.     

Survivors of acute respiratory distress syndrome: relationship between pulmonary dysfunction and long-term health-related quality of life

BACKGROUND: Patients who survive acute respiratory distress syndrome (ARDS) often report decreased general health-related quality of life (HRQOL) following hospital discharge. The extent to which this impairment is due to pulmonary or nonpulmonary causes is unclear. We describe the pattern of recovery of patients surviving ARDS to illuminate any relationships between lung spirometry values, pulmonary symptoms, and overall HRQOL. METHODS: Seventy-three survivors of ARDS were enrolled in a 12-month follow-up study as part of a phase III randomized, multicenter trial. Patients were contacted at 3, 6, and 12 months after enrollment to complete generic and disease-specific HRQOL questionnaires and have lung spirometry tests performed. RESULTS: For all domains of the Medical Outcomes Study Short Form-36 (SF-36) and the St. George's Respiratory Questionnaire (SGRQ) at all time intervals, survivors of ARDS had significantly lower scores than age- and sex-matched population values. Over the 12-month follow-up period, we observed significant improvements to the overall Physical Component Score, but the Mental Component Score of the SF-36 and the SGRQ scores were not statistically different. Physical performance measures suggested that by 12 months, 57% had not returned to "normal activity." At 12 months, lung spirometry tests demonstrated mild abnormalities that were stable over time (64% and 49% had <80% predicted forced expiratory volume in 1 sec [Fev1] and forced vital capacity [Fvc], respectively). At 12 months, the forced expiratory volume in 1 sec correlated strongly with the physical function domain of the SF-36 (correlation coefficient = 0.601; p < .01) and moderately with all domains of the SGRQ (correlation coefficient = -0.36, -50; p < .01 in all cases). In addition, there were several strong to moderate correlations between the various domains of the SF-36 and SGRQ. CONCLUSIONS: Survivors of ARDS have considerable respiratory symptoms and reduced HRQOL that is still prevalent at 12 mos following onset of injury. There are significant correlations between lung spirometry, pulmonary symptoms, and overall HRQOL, thus suggesting the acute lung injury/ARDS is causally contributing to the observed long-term outcome.     

Religiosity, spirituality, and marital relationships of parents raising a typically developing child or a child with a disability

In order to discover if differences or relationships exist between religiosity, spirituality, and marital relationships, 111 parents raising a child with a disability (CWD) and 34 parents raising typically developing children independently completed self-report questionnaires assessing religiosity, spirituality, and marital relationships. Parents raising typically developing children scored higher on private and public religiosity and marital satisfaction than parents raising a CWD; mothers scored higher on religiosity variables than fathers. Mothers' ratings of spirituality and family type (disability or typically developing child) predicted their ratings of marital conflict. Higher spirituality and raising typically developing children were associated with higher ratings of marital satisfaction for both mothers and fathers. However, spirituality also moderated the relationship between private/public religiosity and marital satisfaction only for fathers. This information helps improve interventions for families raising CWD and adds to the literature on the interplay of religiosity/spirituality/marital relationship.     

Spirituality, mental health, physical health, and health-related quality of life among women with HIV/AIDS: integrating spirituality into mental health care

HIV-positive women have used spirituality as a resource to enhance their psychological well-being and health-related quality of life (HRQOL). The purpose of this article is to review the literature about depression among HIV-positive women and to describe the positive associations reported among spirituality, mental health, and HRQOL. This article also advocates the development and use of interventions integrated with spirituality. The incorporation of spirituality into traditional mental health practices can optimize healthcare for HIV-positive women who are diagnosed with depression. A case example is presented and spiritual implications are discussed.     

The importance of symptom surveillance during follow-up care of leukemia, bladder, and colorectal cancer survivors

Purpose

We examined cancer survivors’ experience of bothersome symptoms, association of symptom bother with health-related quality of life (HRQOL), survivors’ perception of symptom care, and their symptom-related information needs.

Methods

Using self-report survey measures, survivors of leukemia, bladder, or colorectal cancer who were 2–5 years post-diagnosis and received follow-up care in the past year (N?=?623) provided information about the presence of bothersome symptoms, symptom-related information needs, adequacy of symptom-related care, and their physical and mental HRQOL. Multivariable statistical analyses were conducted to identify correlates of symptom bother, inadequate care, and symptom information needs and to examine the association between symptom bother and HRQOL.

Results

Twenty-eight percent of the 606 respondents experienced symptom bother in the past year (46 % of leukemia, 24 % of bladder, and 26 % of colorectal cancer survivors). Younger survivors, those of Hispanic ethnicity, with low income, those with recurrent cancer, and chemotherapy recipients were more likely to report symptom bother (all p?<?0.05). Symptom bother was associated with lower physical and mental HRQOL (p?<?0.001). While 92 % of survivors with symptoms discussed them with their follow-up care physician, 52 % of these reported receiving inadequate symptom care. Survivors reporting inadequate symptom care were 2.5 times as likely to identify symptom information needs compared to those who received adequate care (p?<?0.05).

Conclusions

One in four cancer survivors report symptoms 2–5 years post-diagnosis, and only half of these survivors receive adequate care to address those symptoms. Research that refines and tests symptom care interventions for this population is warranted.     

Cancer experiences and health-related quality of life among racial and ethnic minority survivors of young adult cancer: a mixed methods study

Purpose

Young adult (YA) racial and ethnic minority survivors of cancer (diagnosed ages 18–39) experience significant disparities in health outcomes and survivorship compared to non-minorities of the same age. However, little is known about the survivorship experiences of this population. The purpose of this study is to explore the cancer experiences and health-related quality of life (HRQOL) among YA racial/ethnic minorities in an urban US city.

Methods

Racial and ethnic minority YA cancer survivors (0 to 5 years posttreatment) were recruited from a comprehensive cancer center using a purposive sampling approach. Participants (n = 31) completed semi-structured interviews, the FACT-G (physical, emotional, social well-being) and the FACIT-Sp (spiritual well-being). Mixed methods data were evaluated using thematic analysis and analysis of covariance (ANCOVA).

Results

The majority of survivors were women (65 %), single (52 %), and Hispanic (42 %). Across interviews, the most common themes were the following: “changes in perspective,” “emotional impacts,” “received support,” and “no psychosocial changes.” Other themes varied by racial/ethnic subgroups, including “treatment effects” (Hispanics), “behavior changes” (Blacks), and “appreciation for life” (Asians). ANCOVAs (controlling for gender and ECOG performance status scores) revealed that race/ethnicity had a significant main effect on emotional (P = 0.05), but not physical, social, or spiritual HRQOL (P > 0.05).

Conclusions

Our findings suggest that minority YA cancer survivors report complex positive and negative experiences. In spite of poor health outcomes, survivors report experiencing growth and positive change due to cancer. Variations in experiences and HRQOL highlight the importance of assessing cultural background to tailor survivorship care among YA racial and ethnic minorities.

     

Impact of symptom burden in post-surgical non-small cell lung cancer survivors

Purpose

Pain, fatigue, dyspnea, and distress are commonly reported cancer-related symptoms, but few studies have examined the effects of multiple concurrent symptoms in longer-term cancer survivors. We examined the impact of varying degrees of symptom burden on health-related quality of life (HRQOL) and performance status in surgically treated non-small cell lung cancer (NSCLC) survivors.

Methods

A sample of 183 NSCLC survivors 1–6 years post-surgical treatment completed questionnaires assessing five specific symptoms (pain, fatigue, dyspnea, depression, and anxiety), HRQOL, and performance status. The number of concurrent clinically significant symptoms was calculated as an indicator of symptom burden.

Results

Most survivors (79.8 %) had some degree of symptom burden, with 30.6 % reporting one clinically significant symptom, 27.9 % reporting two symptoms, and 21.3 % reporting three or more symptoms. Physical HRQOL significantly decreased as the degree of symptom burden increased, but mental HRQOL was only significantly decreased in those with three or more symptoms. Receiver-operating characteristic (ROC) curves showed that having multiple concurrent symptoms (two or more) was most likely associated with limitations in functioning (area under a ROC curve?=?0.75, sensitivity?=?0.81, specificity?=?0.54).

Conclusions

Two or more clinically significant symptoms are identified as the “tipping point” for showing adverse effects on HRQOL and functioning. This highlights the need for incorporating multiple-symptom assessment into routine clinical practice. Comprehensive symptom management remains an important target of intervention for improved post-treatment HRQOL and functioning among lung cancer survivors.     

Difference in reported pre-morbid health-related quality of life between ARDS survivors and their substitute decision makers

Context Substitute decision makers may consider the pre-morbid health status of their critically ill loved one when making treatment decisions on her/his behalf.Objective To compare estimates of pre-morbid health-related quality of life (HRQOL) obtained from survivors of the acute respiratory distress syndrome (ARDS) with those of their substitute decision makers using the Short Form 36 (SF-36).Design Prospective cohort study.Setting University-affiliated intensive care unit in Toronto, Canada.Patients A sample of 46 ARDS survivors and their substitute decision makers drawn from a previously described cohort.Interventions We measured agreement and differences between responses on the SF-36 obtained from survivors (at 3 months after ICU discharge) and their substitute decision makers (at study entry).Measurements and results Agreement was poor for all SF-36 components and differences reached significance in three domains. In multivariable analysis considering age; sex; Acute Physiology, Age, and Chronic Health Evaluation II score; and Lung Injury Score, only patient age was associated with the mean difference between estimates for the ‘Mental Health’ domain. On average, estimates of pre-morbid HRQOL obtained from substitute decision makers were lower than those obtained from survivors.Conclusion Agreement between estimates of pre-morbid HRQOL provided by ARDS survivors and their substitute decision makers was poor. Compared with survivors, proxies tended to provide lower estimates of pre-morbid HRQOL. Substitute decision making for incapacitated patients is an imperfect process during which family members may underestimate their loved ones' own perception of pre-morbid health status. Alternatively, survivors of critical illness may overestimate pre-morbid HRQOL.This article is discussed in the editorial available at:     

Spirituality in nursing and health-related literature: a concept analysis.

Spirituality has become an increasingly popular concept among the nursing and health-related literature. The purpose for conducting this concept analysis, guided by Walker and Avant's methodology, was to (a) examine how spirituality has been used within the current body of nursing and health-related literature, (b) clarify the meaning of spirituality by discovering what this concept's current critical attributes/characteristics are, and (c) propose a definition of spirituality based on the concept analysis findings. A total of 90 references were reviewed, including 73 nursing and health-related references. Concept analysis findings revealed that spirituality was defined within four main themes in the nursing and health-related literature: (a) spirituality as religious systems of beliefs and values (spirituality = religion); (b) spirituality as life meaning, purpose, and connection with others; (c) spirituality as nonreligious systems of beliefs and values; and (d) spirituality as metaphysical or transcendental phenomena.     

PS1-21: Long-term Rectal Cancer Survivors: Perceived Effects of Cancer on Work and Volunteering

Background/Aims Surgical treatments for rectal cancer include intestinal ostomy (externalization of the bowel to the abdominal wall) or, more frequently, an anastomosis (reconnection) of the rectum. These surgeries can give rise to long-term after-effects. We examined differences reported between survivors with ostomies (SO) versus anastomoses (SA) with respect to their work and volunteer activities, and how much they perceived their cancer affected these experiences. Methods We mailed our survey to 1,000 long-term (=5 years post-diagnosis) rectal cancer survivors in KP Northern California and KP Northwest during 2010-2011. Our overall response rate was 57.7% (577/1,000). The survey asked about current employment status and the impact of their cancer on labor force participation, demotions, job discrimination, forced retirement, and volunteer activities. Responses from 446 survivors (SA=292 (65%), SO=154 (35%)) were analyzed for differences in changes in work- and volunteer activities. Results Mean ages for both groups were significantly beyond the retirement age for most Americans (SA=72 yrs, SO=74 yrs). SAs were more likely to be currently working (FT+PT = 30% (89/292)) than SOs (FT+PT = 17% (25/151)), while SOs were more likely to be retired (67% (101/151) vs. 55% (160/292) (p<.05). Rates of permanent disability were similar between the groups-SOs=6.6% (10/151), SAs=5.5% (16/292). One-fifth of survivors (SA=22% (65/290), SA=18% (28/154)) reported volunteering on a regular basis an average of 11 (SOs) to 15 (SAs) hours/week. SAs reported more support from employers than SOs (64% (138/215) vs. 53% (60/113), p<.05), and from co-workers (68% (146/214) vs. 57% (64/112), p<.05). SAs and SOs did not differ in marital status at times of diagnosis or survey. The distribution of marital status shifted between diagnosis and survey: 72% (305/425) were married and 10% (43/425) were widowed at diagnosis; 62% (263/424) were married and 20% (84/424) were widowed at time of survey. No differences were reported by treatment about being forced into retirement. Discussion Compared to SOs, SAs were more likely to be currently employed, to receive higher rates of support from employers and coworkers, and to volunteer more hours. Perhaps interventions can be developed to allow ostomy survivors to participate more in these functions in their communities.     

A striving for independence: a qualitative study of women living with vertebral fracture

Background  

Quantitative studies using generic and disease-specific health-related quality of life (HRQOL) questionnaires have shown that osteoporosis-related vertebral fractures have a significant negative effect on HRQOL, but there are only few studies that address what it means to live with vertebral fracture from a deeper experiential perspective. How HRQOL and daily life are affected several years after vertebral fracture and how women cope with this are more unclear. This study aimed to describe how HRQOL and daily life had been affected in women with vertebral fracture several years after diagnosis.