[Which approach of therapeutic education (TE) for adolescents and young adults with cancer? Experience from the TE working group of "Go-AJA"]. / Quelle démarche d'éducation thérapeutique (ETP) pour les adolescents et jeunes adultes atteints de cancer ? Expérience du groupe ETP de « Go-AJA ¼.

INTRODUCTION: Therapeutic education (TE) is a practice developed over 40 years at an international level to give people with chronic illness the skills necessary to help them better manage their disease. The lengthening survival time of cancer patients as well as changes in the patient-caregiver relationship have contributed to the development of TE in oncologic diseases. Every year in France, about 1900 adolescents and young adults (15-25 years old) are diagnosed with cancer which is the second leading cause of death in this age group. The observed survival rates for these patients are lower when compared with children's. Some of the hypotheses put forward to explain this difference include a lack of constancy in care and a non-following treatment, as failure to adhere to therapies is common in this age group. "Go-AJA", an interdisciplinary national organization established in 2012, aims to improve the quality of care and treatment results for AYA living with cancer. Therapeutic education for AYA in oncology is an active working group of "Go-AJA" and intends to draw recommendations and to improve adapted communication on different education topics. Elaboration and preparation of TE programs by skilled multidisciplinary teams engaged in interactive educational actions is the first and most crucial step. MATERIALS AND METHODS: The TE "Go-AJA" working group has federated pediatric and adult oncologists, nurses, psychologists, TE professionals, and resource patients, thanks to the commitment of professionals from the 8 national teams supported by the National Cancer Institute. Physical meetings and conference calls were organized from 2012 to 2015 to construct TE tools and programs for AYA with cancer. RESULTS: A competence referential was built and adapted to AYA population with cancer, after focused groups organized in 2 main oncology centers with on-therapy sarcoma patients and members of the multidisciplinary TE working group. Tools were validated and adapted to adolescents or young adults with cancer, to help in the 4 stages of TE: the "educational diagnosis" allowing the caregiver to better understand the patient in his life journey with the disease; the "therapeutic alliance" allowing to agree with the patient on his/her priorities; the "implementation" which is an action step: information, awareness, learning and psychosocial support. The final step called "assessment" allows the caregiver to take stock on the changes and difficulties with the patient. TE for AYA with cancer included individual and/or group sessions to improve self-care skills: knowledge about the disease (group sessions "what is cancer?" with use of microscopes to visualize sarcoma cells, and guided tours in a tumor research laboratory), and details about the treatment and its consequences (workshops about "management of febrile neutropenia"). Moreover, TE aimed to enrich the field of coping skills, in particular to improve the coordination and experience of cares between the different complex and varied network of care (group and/or individual sessions focused on physical rehabilitation, and adapted school/professional orientation). CONCLUSION: Regardless of the care system, care workers dedicated to AYA with cancer should use TE-specific actions to reinforce treatment participation and therapeutic relationships. This active multidisciplinary TE working group dedicated to AYA with cancer elaborated TE programs by skilled multidisciplinary teams engaged in interactive educational actions. After this work of a national TE organization, more studies using methodological tools are still required to evaluate the impact of such implemented programs on the treatment results and the quality of life.

Self-care support in paediatric patients with type 1 diabetes: bridging the gap between patient education and health promotion? A review.

BACKGROUND: This study examines how the term 'self-care' imported from health promotion has been used in the context of patient education interventions for paediatric patients with type 1 diabetes. METHODS: Thirty articles over the last decade were analysed, using a qualitative method of thematic coding and categorizing. RESULTS: The term 'self-care' has been mainly used as a synonym for self-management of one's condition and treatment. Indeed, the activities performed by paediatric patients independently or with the help of their parents under the term 'self-care' fail to explicitly take into account the general health and life dimensions of self-care, as defined in health promotion. Although such dimensions are implicitly present when it comes to define the parents' and health-care providers' roles in supporting the children's emerging self-care capacity, their importance is acknowledged as a way of strengthening the children's and their families' capacity to respond to illness demands, rather than in relation to their general well-being. CONCLUSION: The discourse on self-care in the field of paediatric diabetes therefore appears to be oriented more towards disease and prevention, rather than health promotion. The psychosocial dimension of self-care should be particularly investigated, as young patients need to be supported in their efforts to gain autonomy not only in relation to the management of their condition, but in their lives in general.

TOPICOP©: a new scale evaluating topical corticosteroid phobia among atopic dermatitis outpatients and their parents.

BACKGROUND: The fear of using topical corticosteroids, usually called topical corticophobia, is a frequent concern for atopic dermatitis patients and/or their parents. Assessing patients' atopic dermatitis and their parents' topical corticosteroid phobia is an essential step to improving adherence to treatment. Because topical corticophobia appears to be a complex phenomenon, its evaluation by binary responses (yes/no) is too simplistic. Thus, a scale is needed, which is capable of identifying the subtleties of topical corticosteroid phobia. OBJECTIVES: To develop and validate a scale, TOPICOP©, measuring worries and beliefs about topical corticosteroids among atopic dermatitis outpatients and their parents. METHODS: An initial statistical validation of TOPICOP was carried out, collecting qualitative data about patients' topical corticophobia behaviors and beliefs using focus-group methodology. Then, 208 outpatients or their parents from five French centers completed a self-administered questionnaire built from focus-group results. The scale-development process comprised an explanatory principal component analysis, Cronbach's α-coefficients and structural equation modeling. RESULTS: The validated questionnaire comprised 12 items, covering two important dimensions relative to "worries" (6 items) and "beliefs" (6 items). Psychometric properties showed that items had very good communality (>0.60) within their own dimension. The final two-factor solution accounted for 47.3% of the variance. Cronbach's α-coefficients were, respectively, 0.79 and 0.78. Structural equation modeling strongly supported the possibility of calculating a global score. CONCLUSIONS: TOPICOP© is the first scale aimed at assessing topical corticophobia in adult patients and parents of children with eczema. TOPICOP® has excellent psychometric properties and should be easy to use in everyday clinical practice for clinicians and researchers. Further studies are needed to confirm our results and validate TOPICOP© in other cultures.

IQoL-32: a new ichthyosis-specific measure of quality of life.

BACKGROUND: Inherited ichthyoses are associated with impaired quality of life (QoL). OBJECTIVES: The aim of this study was to create and validate a QoL questionnaire specifically dedicated to patients with ichthyosis. METHODS: A prequestionnaire was drawn after selecting items from a verbatim transcript. It was then subjected to a cognitive debriefing. During the validation step, this questionnaire was sent to patients with the Dermatology Life Quality Index, Short Form-12 health-related questionnaire, and severity scores (global severity: mild/moderate/severe/very severe; clinical severity evaluated by 6 visual analog scales). A shortened version of the questionnaire was designed. The validity of the tool was confirmed: for its structure and 1-dimensional nature (Cronbach α), convergent (Spearman correlation) and discriminating (Tukey test) validity; α risk was fixed at 5%. RESULTS: The initial questionnaire included 60 items. During the validation phase, 59 subjects were tested. The shortened version included 32 items (IQoL-32) and 7 dimensions (Cronbach α: 0.94). The higher the score, the more impacted the QoL. IQoL-32 was positively correlated to Dermatology Life Quality Index (P < .0001) and negatively to Short Form-12 health-related questionnaire (P < .0001). IQoL-32 was highly correlated to clinical severity: overall analysis (Spearman ranking: 0.72; P < .0001) or analysis per dimension (highest correlations: discomfort, pain, interpersonal relations). IQoL-32 demonstrated a higher correlation with visual analog scale compared with Dermatology Life Quality Index and Short Form-12 health-related questionnaire. It also showed a good discriminating power (P < .0001) according to overall severity levels. LIMITATIONS: Only patients residing in France were included. CONCLUSION: IQoL-32 is a specific and validated questionnaire for inherited ichthyosis. It will be very useful for patient care and research.