Palliative care in adolescents and young adults with cancer

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Abstract

<p class="first" id="P1">Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities. </p>

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Most cited references 7

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Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals.

A. Waller, A Girgis, D Currow … (2008)

Needs assessment strategies can facilitate prioritisation of resources. To develop a needs assessment tool for use with advanced cancer patients and caregivers, to prompt early intervation. A convenience sample of 103 health professionals viewed three videotaped consultations involving a simulated patient, his/her caregiver and a health professional, completed the Palliative Care Needs Assessment Tool (PC-NAT) and provided feedback on clarity, content and acceptability of the PC-NAT. Face and content validity, acceptability and feasibility of the PC-NAT were confirmed. Kappa scores indicated adequate inter-rater reliability for the majority of domains; the patient spirituality domain and the caregiver physical and family and relationship domains had low reliability. The PC-NAT can be used by health professionals with a range of clinical expertise to identify individuals' needs, thereby enabling early intervention. Further psychometric testing and an evaluation to assess the impact of the systematic use of the PC-NAT on quality of life, unmet needs and service utilisation of patients and caregivers are underway.

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Perceptions of the term palliative care.

I. F. Yusuf, B P Himelstein, A Morstad (2006)

To assess parents' and health care providers' perceptions of the name and description of a pediatric palliative care (PPC) program. Survey conducted at three pediatric health care sites; asked respondents (parents and staff) about their likelihood to use a program identified either as palliative care or supportive care, as well as their understanding and feelings about the program before and after reading a program description. Response rate was 89% (195/220); 184 were considered evaluable. Parent respondents in the supportive care group scored significantly higher (Mann-Whitney test, p = 0.003) on "likelihood to use program" (mean score, 4.22, n = 60) than those in the palliative care group (mean score, 3.58, n = 45) before each read the program description. However, this group difference disappeared (p = 0.582) after reading the description (mean scores 4.50, 4.38, respectively; n = 48, n = 40, respectively). The name palliative care evoked more negative emotions compared to the supportive care name in parents, and reading the program description led to more positive feelings. In staff, reading the program description significantly increased likelihood to use the program for those in the Palliative Care group only (4.22 to 4.44; p < 0.05; n = 41). Staff also had more positive feelings about the program called supportive care, and rated this name best most frequently. Better definition of and explanation to families and health care providers about what palliative care programs offer may improve perceptions about palliative care and increase program utilization.

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Teaching and learning end-of-life care: evaluation of a faculty development program in palliative care.

Amy Sullivan, Matthew D Lakoma, J Billings … (2005)

To evaluate the effectiveness of the Program in Palliative Care Education and Practice (PCEP), an intensive faculty development program at Harvard Medical School. PCEP is a two-week program offered annually with two on-site sessions in Boston, MA, and an interim period distance-learning component. Training integrates palliative care clinical skill development, learning theory and teaching methods, and leadership and organizational change. Longitudinal surveys (preprogram, retrospective preprogram, and postprogram) of participants from 2000-03 assessed self-reported preparation in providing and teaching palliative care; teaching and patient care practices; and satisfaction with program. The response rate was 96% (n=149) for Session I and 72% for both Session I and II (n=113). Questionnaire responses demonstrated statistically significant improvements with large effect sizes (range 0.7-1.8) on nearly all measures. Preparation increased from 3.0+/-1.1 to 4.2+/-0.7 for providing end-of-life care (1=not well prepared, 5=very well prepared), and from 2.6+/-1.0 to 4.3+/-0.7 for teaching this topic. Respondents reported behavioral changes in patient care and teaching; e.g., after the program, 63% noted that, specifically as a result of attending the course, they encouraged learners to reflect on their emotional responses to dying patients, and 57% conducted experiential exercises (e.g., role-play). Eighty-two percent rated the experience as "transformative," and many responses to open-ended items described powerful learning experiences. Participants rated the program highly (4.9+/-0.1, 1=lowest, 5=highest rating). Integrating clinical content with learning about educational methods is an efficient and effective approach to enhancing clinical faculty's capacity to model and teach clinical care. This program offers an educational model that engages practitioners, stimulates changes in practice, and offers opportunities for reflection and professional revitalization.