Initial development of the Symptom Screening in Pediatrics Tool (SSPedi).
ABSTRACT We previously identified published scales for symptom assessment in pediatric cancer patients. The objectives of this study were to identify if any of these scales were suitable for use or adaptation as a self-report symptom screening tool, and if not, to begin the process of creating a new tool.
A focus group of ten healthcare professionals with expertise in pediatric cancer symptom management and a patient advocate were convened. First, the group identified the optimal properties of a symptom screening tool for pediatric cancer patients. Next, the previously identified symptom assessment scales were evaluated against these properties. As none of the existing scales were adequate for symptom screening, a nominal group technique was used to identify the most important symptoms for inclusion in a new symptom screening tool.
Optimal properties of a symptom screening tool included minimal respondent burden, inclusion of 15 items or less, and inclusion of the most burdensome symptoms. None of the previously identified scales were adequate because they lacked content validity and were too long or would be too hard for children to understand. Nominal group technique identified 15 items to be included; an initial draft was developed and named the Symptom Screening in Pediatrics (SSPedi) Tool.
This study identified the lack of an appropriate symptom screening tool for use by pediatric cancer patients. A preliminary version of SSPedi was developed. Subsequent work will ensure that it is understandable by children and evaluate its psychometric properties.
Full-textDOI: · Available from: Donna Johnston, Feb 02, 2014
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ABSTRACT: Pain that occurs both within and outside of the hospital setting is a common and distressing problem for adolescents with cancer. The use of smartphone technology may facilitate rapid, in-the-moment pain support for this population. To ensure the best possible pain management advice is given, evidence-based and expert-vetted care algorithms and system design features, which are designed using user-centered methods, are required. To develop the decision algorithm and system requirements that will inform the pain management advice provided by a real-time smartphone-based pain management app for adolescents with cancer. A systematic approach to algorithm development and system design was utilized. Initially, a comprehensive literature review was undertaken to understand the current body of knowledge pertaining to pediatric cancer pain management. A user-centered approach to development was used as the results of the review were disseminated to 15 international experts (clinicians, scientists, and a consumer) in pediatric pain, pediatric oncology and mHealth design, who participated in a 2-day consensus conference. This conference used nominal group technique to develop consensus on important pain inputs, pain management advice, and system design requirements. Using data generated at the conference, a prototype algorithm was developed. Iterative qualitative testing was conducted with adolescents with cancer, as well as pediatric oncology and pain health care providers to vet and refine the developed algorithm and system requirements for the real-time smartphone app. The systematic literature review established the current state of research related to nonpharmacological pediatric cancer pain management. The 2-day consensus conference established which clinically important pain inputs by adolescents would require action (pain management advice) from the app, the appropriate advice the app should provide to adolescents in pain, and the functional requirements of the app. These results were used to build a detailed prototype algorithm capable of providing adolescents with pain management support based on their individual pain. Analysis of qualitative interviews with 9 multidisciplinary health care professionals and 10 adolescents resulted in 4 themes that helped to adapt the algorithm and requirements to the needs of adolescents. Specifically, themes were overall endorsement of the system, the need for a clinical expert, the need to individualize the system, and changes to the algorithm to improve potential clinical effectiveness. This study used a phased and user-centered approach to develop a pain management algorithm for adolescents with cancer and the system requirements of an associated app. The smartphone software is currently being created and subsequent work will focus on the usability, feasibility, and effectiveness testing of the app for adolescents with cancer pain.03/2014; 3(1):e15. DOI:10.2196/resprot.3041
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ABSTRACT: Little is known about the symptom experience and quality of life of children and youths who have completed treatment for a pediatric brain tumor. This study describes the symptom experience and health-related quality of life (HRQL) of children who have survived a brain tumor. This observational, cross-sectional study used a convenience sample of 50 children who were being followed in ambulatory care after they had completed brain tumor treatment. Their symptom experience was measured using the Memorial Symptom Assessment Scale (MSAS) and HRQL was measured using the Pediatric Quality of Life Inventory (the PedsQL) . The median number of symptoms reported by the participants was six. The most prevalent symptoms were lack of energy (52%), feeling drowsy (41%), difficulty with sleep (38%), lack of concentration (36%) and headaches (36%). Among those reporting symptoms, the most distressing symptoms were pain (14%), headaches (12%), lack of energy (8%), difficulty with sleep (8%) and feeling irritable (4.6%). Four symptoms -- lack of energy, concentration, pain and shortness of breath -- explained most of the variance in the PedsQL subscales and total scores. Pediatric brain tumor survivors experience many symptoms after treatment. Care providers should be particularly diligent screening for symptoms including pain, headaches, fatigue and sleep problems, as these symptoms may be particularly distressing for children.Journal of pain and symptom management 04/2014; 48(5). DOI:10.1016/j.jpainsymman.2013.12.243 · 2.74 Impact Factor
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ABSTRACT: Background: Objective was to evaluate and refine a new instrument for paediatric cancer symptom screening named the Symptom Screening in Pediatrics Tool (SSPedi). Methods: Respondents were children 8-18 years of age undergoing active cancer treatment and parents of eligible children. Respondents completed SSPedi once and then responded to semi-structured questions. They rated how easy or difficult SSPedi was to complete. For items containing two concepts, we asked respondents whether concepts should remain together or be separated into two questions. We also asked about each item's importance and whether items were missing. Cognitive probing was conducted in children to evaluate their understanding of items and the response scale. After each group of 10 children and 10 parents, responses were reviewed to determine whether modifications were required. Recruitment ceased with the first group of 10 children in which modifications were not required. Results: Thirty children and 20 parents were required to achieve a final version of SSPedi. Fifteen items remain in the final version; the score ranges from 0 to 60. Conclusions: Using opinions of children with cancer and parents of paediatric cancer patients, we successfully developed a symptom screening tool that is easy to complete, is understandable and demonstrates content validity.British Journal of Cancer 08/2014; 111(7). DOI:10.1038/bjc.2014.445 · 4.82 Impact Factor