The Art of Age-Appropriate Care

Abstract

Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.

A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases

“…All studies were observational; none employed experimental or quasi-experimental designs. Eleven studies used qualitative or survey methods to obtain input from patients, 4,7,[18][19][20][21][22][23][24][25][26] and 17 studies were narrative reports describing one group's experiences with engagement. [27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43] The remaining seven studies were descriptions of specific initiatives reported on websites [44][45][46][47][48][49][50] ( Table 1 and Table 2).…”

“…cians. 20,38,39,47,49 Seven studies were classified as sufficiently descriptive 7,18,19,[23][24][25][26] The purposes of engagement included identifying patient-centered research topics or agendas, 19,23,29,36,39 identifying outcomes important to patients or developing measures relevant to patients' needs, 7,19,20,23,25,26 increasing recruitment or enrollment through development of patient-centered study designs, 4,18,21,24,27,30,31,41 and incorporating the patient perspective into study design 19,25,35,39,40 (Table 2, Table 3). Patients and other stakeholders were most commonly engaged in the preparatory stage (n= 19 for agenda setting) 4, 7, 19, 20, 23, 25, 28, 29, 32, 35, 36, 39- (Table 4 [online]).…”

“…7, 18-20, 23-26, 36, 39, 45 One study obtained patient feedback on informational materials that would be presented to study subjects. 19 Thirteen studies described more collaborative involvement in at least one stage of the research process; for example, including patients on governing or advisory committees, 32,33,38,42,48 in developing study interview guides, study materials and websites; 21,35,52 in collecting data (conducting interviews), 4,21 in reviewing research findings, 21,28 and in disseminating findings. 4,33,37,[40][41][42] Stakeholder-driven approaches were reported; included here are examples of patients or advocacy organizations initiating new studies 4,29,37,41,42,46 and controlling the research process by setting the research agenda, having responsibility for data collection, and disseminating findings (e.g., Patient-Powered Registries 43 ).…”

“…Conversely, in four studies, patient organizations were engaged only for providing access to their members. 27,30,31,46 Four studies reported that patients or other stakeholders were prepared for engagement in research, ranging from an informational video 24 to in-person workshops; 21,40,48 none reported training researchers in engagement methods.…”

“…However, many studies reported perceived impact of engagement that was not measured and could not be confirmed. Some perceived benefits relative to other studies that did not use engagement were practical, such as improved access to patients or improved recruitment methods, 4,19,29,30,35,42,43 improved study retention, 19 more in-depth responses in interviews (when using patients to conduct the interviews), 21 less time to complete the project, 4 and incorporation of a broader range of outcome measures to inform future risk-benefit assessments for investigational treatments. 49 Other perceived benefits were less tangible, such as increased relevance of the project, 4,29,35 broader dissemination of findings, 35 improved acceptance of research findings among end-users, 29 greater mutual respect between scientists and patients, 32 and increased transparency of and public confidence in the research.…”