Psychosocial care for cancer survivors: A global review of national cancer control plans.

OBJECTIVE: National Cancer Control Plans (NCCPs) are high-level policy documents that prioritise actions to be taken to improve cancer control activities. As the number of cancer survivors grows globally, there is an urgent need to assess whether and how psychosocial care across the cancer care continuum is included in NCCPs. This review aimed to ascertain the extent to which NCCPs referenced psycho-oncology care for cancer survivors in the post-treatment phase. METHODS: NCCPs were obtained from the International Cancer Control Partnership (ICCP) portal (in November 2021) and reviewed in two phases. In Phase 1, all available NCCPs were screened to determine whether they mentioned psycho-oncology or survivorship. In Phase 2, reviewers extracted data from the NCCPs identified in Phase 1 on the degree that each plan articulated objectives/goals to improve psychosocial care in the post-treatment survivorship phase. RESULTS: We screened 237 NCCPs. Of these, initial potential reference to psycho-oncology and survivorship content were identified in 97 plans (41%). In Phase 1, 57/97 (59%) had reference to psycho-oncology or survivorship content within defined criteria. In Phase 2, 27/97 (28%) had little mention of psycho-oncology specifically in survivorship, 47/97 (48%) had some (general or brief) mention, and the remaining 23/97 (24%) had substantial content/specific sections and clearly articulated goals and/or objectives. Common goals for improving psychosocial care in the post-treatment period included building capacity of healthcare professionals, implementing rehabilitation models, and increasing the utilisation of community services. CONCLUSIONS: Most NCCPs did not reference psycho-oncology and only one-quarter contained clear objectives specifically in the post-treatment survivorship phase.

The impact of survivorship care plans on adolescent and young adult head and neck cancer survivors and their primary care providers.

PURPOSE: A cross sectional study of adolescent and young adult (AYA) head and neck (H&N) cancer survivors was performed to assess late effects. Survivorship care plans (SCPs) were generated and evaluated by participants and their primary care providers (PCPs). METHODS: AYA H&N survivors who had been discharged over 5 years prior from our institution were assessed in recall consultation by a radiation oncologist. Late effects were assessed and individualized SCPS were created for each participant. Participants completed a survey evaluating the SCP. PCPs were surveyed before the consultation and after evaluating the SCP. RESULTS: 31/36 participants (86%) completed the SCP evaluation. The SCP was considered to be a positive experience for 93% of participants. Most of the AYA participants indicated that the information provided in the SCP helped them understand the need for follow-up to assess late effects (90%). The pre-consultation PCP survey response rate was 13/27 (48%) and only 34% were comfortable in providing survivorship care for AYA H&N cancer patients. The PCP response rate to the survey that accompanied the SCP was 15/27 (55%) and the majority (93%) reported that the SCP would be helpful to care for other AYA and non-AYA cancer survivors in their practice. CONCLUSIONS: Our research suggested that AYA head and neck cancer survivors valued the SCPs as did their PCPs. IMPLICATIONS FOR CANCER SURVIVORS: The introduction of SCPs is likely to help improve survivorship and transitioning of care from the oncology clinic to PCP in this population.

Transforming normative, ableist, and biomedical orientations to living well and quality of life in nursing: Reimagining what a ventilated body can do.

A goal of living as well as possible is central to practice and research with young adults living with home mechanical ventilation (HMV). Significant effort has been put into conceptualizing and measuring the quality of life (QOL) as a proxy for living well. Yet, dominant understandings of QOL have been influenced by normative, ableist, and biomedical discourses about what constitutes a good life that, when applied in practice and systems with those living with HMV, can contribute to exclusion and constrain opportunities to live well. Inquiry into what certain understandings of living well can do is critical to opening up possibilities to reimagine living well with HMV. This paper draws on findings from a critical narrative inquiry that explored the experiences of five young adults (ages 18-40 years) living with HMV. Data were co-constructed virtually through an initial interview and photo-elicitation using participant-generated photographs. A critical narrative analysis of participants' stories made visible the ideological effects of ableist, biomedical, and individualist discourses and how the young adults reproduced and resisted these dominant discourses. Their stories further opened up possibilities for nurses and other healthcare providers to see living well and QOL differently.

Patient-Reported Outcomes in Adolescent and Young Adult Head and Neck Cancer Survivors Treated with Radiotherapy.

Purpose: There are few studies of adolescent and young adult (AYA) head and neck (H&N) cancer survivors treated with radiotherapy. A recall of AYA H&N survivors was performed and this article evaluates their cross-sectional patient-reported outcomes. Methods: AYA H&N cancer survivors who had received radiotherapy in British Columbia between 1970 and 2010 participated in this study. Participants completed the Psychosocial Screen for Cancer-Revised (PSSCAN-R), Research and Development (RAND)-36 health-related quality of life, and the Vanderbilt Head and Neck Symptom Survey, version 2.0 (VHNSS 2.0), to evaluate late effects from treatment. Results: There were 36 participants in the study. Severe symptoms (greater than or equal to 4/10) were reported on the VHNSS 2.0 by 51% of participants for xerostomia, 35% for dysphagia, and 37% for dental/mucosal sensitivity. On the PSSCAN-R, 35% had moderate/high anxiety scores and 48% had moderate/high depression scores. The mean RAND-36 participant scores were as follows: physical functioning, 86.1; physical role functioning, 71.4; emotional role functioning, 75.1; energy/fatigue, 56.6; emotional well-being, 74.6; social functioning, 76.3; bodily pain, 71.7; and general health, 65.6. Conclusions: AYA survivors in our study reported significant late effects from H&N radiotherapy and high depression and anxiety scores, but generally high health-related quality of life. Prospective evaluation of psychosocial needs and H&N-related complications is warranted in this subgroup at high risk of late effects from treatment.

A cross-sectional assessment of long-term effects in adolescent and young adult head and neck cancer survivors treated with radiotherapy.

PURPOSE: Adolescent and young adult (AYA) head and neck (H&N) cancer survivors are at risk of long-term complications. A cross-sectional study of survivors recalled for clinical evaluation was performed to evaluate late effects in this population. METHODS: Surviving patients who had been diagnosed with H&N cancer between the ages of 15 and 39 years and treated with radiation therapy (RT) in British Columbia between 1970 and 2010 were invited to participate in this study. Survivors were assessed in consultation by a radiation oncologist for a complete history and physical exam. Comprehensive data collection of subjective and objective late effects of RT and screening investigations were completed. RESULTS: Of 36 AYA H&N participants, the majority were female (61%), and the most common tumour sites were thyroid (28%), oropharynx (17%), salivary gland (14%) and larynx (14%). Dental extractions post treatment was performed for 33% and dental implants for 17%. The majority (72%) reported xerostomia, 50% had dysphagia to solids and 25% hearing loss. Of the non-thyroid cancer patients who underwent RT to their neck, 45% developed hypothyroidism. There were 28% of participants with asymptomatic carotid stenosis and 27% with thyroid nodules; all were diagnosed after recall screening. CONCLUSIONS: Survivors of AYA H&N cancer treated with RT reported numerous long-term complications. Comprehensive follow-up and screening guidelines should be established for this at-risk population. IMPLICATIONS FOR CANCER SURVIVORS: AYA H&N cancer survivors and their primary care practitioners should be educated on screening recommendations and the risk of late effects.

Attending to Methodological Challenges in Qualitative Research to Foster Participation of Individuals with Chronic Critical Illness and Communication Impairments.

Individuals with chronic critical illness experience multiple complex physiological disturbances including ongoing respiratory failure, requiring prolonged mechanical ventilation, and thus communication impairments. In conducting a qualitative interpretive description study, we sought to ensure that individuals with chronic critical illness themselves were included as participants. Our commitment to recruiting these individuals to the study and ensuring their data meaningfully informed the analysis and findings required us to reconsider and challenge some of the traditional notions of high-quality qualitative research and develop appropriate practical strategies. These strategies included: (1) centering participant abilities and preferences, (2) adopting a flexible approach to conducting interviews, (3) engaging in a therapeutic relationship, and (4) valuing "thin" data. In this article, we extend existing literature describing the complexities of conducting research with individuals with communication impairments and strategies to consider in the hopes of informing future research with other populations historically excluded from study participation.

Provincial development of a patient-reported outcome initiative to guide patient care, quality improvement, and research.

The BC Cancer Agency Radiotherapy (RT) program started the Prospective Outcomes and Support Initiative (POSI) at all six centres to utilize patient-reported outcomes for immediate clinical care, quality improvement, and research. Patient-reported outcomes were collected at time of computed tomography simulation via tablet and 2 to 4 weeks post-RT via either tablet or over the phone by a registered nurse. From 2013 to 2016, patients were approached on 20,150 attempts by POSI for patients treated with RT for bone metastases (52%), brain metastases (11%), lung cancer (17%), gynecological cancer (16%), head and neck cancer (2%), and other pilots (2%). The accrual rate for all encounters was 85% (n = 17,101), with the accrual rate varying between the lowest and the highest accruing centre from 78% to 89% ( P < .001) and varying by tumour site ( P < .001). Using the POSI database, we have performed research and quality improvement initiatives that have changed practice.

Iranian cancer patient perceptions of prognosis and the relationship to hope.

BACKGROUND: The aim of this study was to investigate Iranian cancer patient perceptions of their prognosis, factors that influence perceptions of prognosis and the effect this has on patient level of hope. MATERIALS AND METHODS: Iranian cancer patients (n=200) completed self-report measures of their perceptions of their prognosis and level of hope, in order to assess the relationship between the two and identify factors predictive of perceptions by multiple linear regression analysis. RESULTS: Cancer patients perceived of their prognosis positively (mean 11.4 out of 15), believed their disease to be curable, and reported high levels of hope (mean 40.4 out of 48.0). Multiple linear regression analyses demonstrated that participants who were younger, perceived they had greater family support, and had higher levels of hope reported more positive perceptions of their cancer prognosis. CONCLUSIONS: Positive perceptions of prognosis and its positive correlation with hope in Iranian cancer patients highlights the importance of cultural issues in the disclosure of cancer related information.

Un-met supportive care needs of Iranian breast cancer patients.

BACKGROUND: Assessment of supportive needs is the requirement to plan any supportive care program for cancer patients. There is no evidence about supportive care needs of Iranian breast cancer patients. So, the aims of present study were to investigate this question and s predictive factors. MATERIALS AND METHODS: A descriptive- correlational study was conducted, followed by logistic regression analyses. The Supportive Care Needs Survey was completed by 136 breast cancer patients residing in Iran following their initial treatment. This assessed needs in five domains: psychological, health system and information, physical and daily living, patient care and support, and sexuality. RESULTS: Patient perceived needs were highest in the health systems and information (71%), and physical and daily living (68%) domains. Logistic regression modeling revealed that younger participants have more un-met needs in all domains and those with more children reported fewer un-met needs in patient care and support domains. In addition, married women had more un-met supportive care needs related to sexuality. CONCLUSIONS: The high rate of un-met supportive care needs in all domains suggests that supportive care services are desperately required for breast cancer patients in Iran. Moreover, services that address informational needs and physical and daily living needs ought to be the priority, with particular attention paid to younger women. Further research is clearly needed to fully understand supportive care needs in this cultural context.

Provincial disparities of growth hormone coverage for young adult survivors of paediatric brain tumours across Canada.

BACKGROUND: Young adult survivors of paediatric brain tumours (PBTs) who have been treated with radiation therapy will likely be severely growth hormone-deficient when retested at the achievement of final height. Growth hormone replacement therapy (GHRT) is administered to treat growth hormone deficiency (GHD). Public drug coverage for GHRT falls under the responsibility of provincial governments across Canada. This study sought to determine the extent of public drug coverage and cost in each Canadian province for GHRT to treat GHD during adulthood for young adult survivors of PBTs. METHODS: Data were collected from provincial government resources and drug formularies from 2012-2013 on the extent of coverage for GHRT based on a clinical case scenario representative of a young adult survivor of a PBT with childhood-onset radiation-induced GHD, the ingredient cost for GHRT and the applicable provincial public drug plan cost-sharing policies. A model was then created to simulate out-of-pocket costs incurred by a young adult male and a young adult female survivor of a PBT for one year of GHRT in each province with applicable cost-sharing arrangements and levels of low annual individual total income that best represent the majority of young adult survivors of PBTs. Out-of-pocket costs were expressed as a percentage of annual income. Comparisons were made between provinces descriptively, and variation among provinces was summarized statistically. RESULTS: Alberta, Manitoba, Ontario, Quebec, New Brunswick, and Newfoundland and Labrador provide coverage for GHD during adulthood on a case-by-case basis, while British Columbia, Saskatchewan, Nova Scotia and Prince Edward Island provide no coverage. The percentage of annual income to fund GHRT across the provinces without public coverage ranged from 14.4% to 25.5% for males and 21.5% to 38.3% for females, and with public coverage was 0.0% to 4.1% for males and 0.0% to 5.0% for females. INTERPRETATION: There are considerable out-of-pocket costs and variation in coverage provided by provincial public drug plans to fund GHRT for young adult survivors of PBTs with GHD. The implementation of a national drug formulary could potentially prevent undue financial hardship and remove disparities resulting from variations in provincial drug plans.

Viewpoints of fertile women on gestational surrogacy in East Azerbaijan Province, Iran.

The aim of this descriptive, cross-sectional study was to investigate the viewpoint of fertile Iranian women on gestational surrogacy. A convenience sample of 230 fertile women was invited to participate in the study and 185 consented. Data were collected via a 22-item scale that assessed the viewpoints of the participants in five domains related to gestational surrogacy. The viewpoints reported by the women were positive. However, a significant percentage of them believed that commissioning couples are not the biological owners of the baby, religious barriers need to be overcome prior to legal barriers, children born through surrogacy may face emotional issues, and the adoption of children may be a better option than surrogacy. The negative views of the women on some key aspects make it clear that public education is needed to increase the acceptability of gestational surrogacy.

Emotional labour of caring for hematopoietic stem cell transplantation patients: Iranian nurses' experiences.

PURPOSE: The purpose of this study was to describe the emotional labour experienced by nurses who care for hematopoietic stem cell transplantation (HSCT) patients in Iran. METHODS: Eighteen nurses participated in semi-structured interviews. The interviews were analyzed using qualitative content analysis methods. RESULTS: Three main categories described the emotional labour involved, namely, emotional intimacy, feeling overwhelmed with the sadness and suffering, and changing self. Nurses had compassion for their patients, contributing to a close nurse-patient relationship. The nurses' emotional labour resulted in their feeling overwhelmed with sadness and suffering. Five subcategories described this emotional toll: (a) witnessing suffering, (b) struggling mentally, (c) hurting emotionally, (d) feeling drained of energy, and (e) escaping grief. Dealing with death and dying on an ongoing basis promoted the nurses' changing self. CONCLUSION: Iranian nurses who care for HSCT patients experience a range of positive and negative emotions. Establishing appropriate support systems for nurses might help mediate the negative aspects of emotional labour. thereby improving nursing work life and ultimately the quality of patient care.

The taboo of cancer: the experiences of cancer disclosure by Iranian patients, their family members and physicians.

OBJECTIVE: The objective of this study is to describe the experiences of cancer disclosure by Iranian cancer patients, their family members and physicians. METHODS: Twenty cancer patients, ten family members and eight physicians participated in this study. Data were collected via semi-structured, in-depth interviews and analyzed using qualitative content analysis. RESULTS: Three categories were identified: cancer avoidance, a climate of non-disclosure and mutual concern. The findings demonstrated that cancer is a taboo subject and the word cancer, as well as other indicative terms, was rarely used in daily communication. A climate of non-disclosure predominated because patients were the last to know their diagnosis, they were unaware of their prognosis, and family members and physicians employed strategies to conceal this information. The mutual concern of patients, family members and physicians was the main reason that cancer was not discussed. CONCLUSION: Cancer is a taboo subject in Iran that is maintained and reinforced primarily because of the mutual concern of patients, family members and physicians. The first step to address this taboo and inform cancer patients of their diagnosis would be to understand and help mitigate the individual, family and social consequences of disclosure.

Cancer disclosure: experiences of Iranian cancer patients.

This study explored Iranian patients' experiences of cancer disclosure, paying particular attention to the ways of disclosure. Twenty cancer patients were invited to participate in this qualitative inquiry by research staff in the clinical setting. In-depth, semistructured interview data were analyzed through content analysis. The rigor of the study was established by principles of credibility, transferability, dependability, and confirmability. Four themes emerged: the atmosphere of non-disclosure, eventual disclosure, distress in knowing, and the desire for information. Non-disclosure was the norm for participants, and all individuals involved made efforts to maintain an atmosphere of non-disclosure. While a select few were informed of their diagnosis by a physician or another patient, the majority eventually became aware of their diagnosis indirectly by different ways. All participants experienced distress after disclosure. The participants wanted basic information about their prognosis and treatments from their treating physicians, but did not receive this information, and encountered difficulty accessing information elsewhere. These challenges highlight the need for changes in current medical practice in Iran, as well as patient and healthcare provider education.