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For Patients with Hidradenitis Suppurativa

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For Patients with Hidradenitis Suppurativa STRATEGIC HEALTH INITIATIVE TO DETERMINE THE STANDARD OF CARE FOR PATIENTS WITH HIDRADENITIS SUPPURATIVA STRATEGIC HEALTH INITIATIVE TO DETERMINE THE STANDARD OF CARE FOR PATIENTS WITH HIDRADENITIS SUPPURATIVA Contents Prologue .............................................................................................................................................. 4 Current situation .............................................................................................................................. 6 The expert panel ...................................................................................................................................... 10 Objectives and methodology of the study ...................................................................................... 13 Improvement indicators ....................................................................................................................... 14 Hidradenitis suppurativa in the first person ......................................................................... 18 Aetiopathogenesis and triggering and/or predisposing factors for HS .................................. 27 Epidemiological aspects ....................................................................................................................... 30 Comorbidities and diseases associated with HS ............................................................................ 33 Economic burden of the disease .............................................................................................. 34 Preliminary considerations for the economic analysis of the costs associated with HS ..... 34 Cost analysis ............................................................................................................................................. 36 Preliminary data ...................................................................................................................................... 39 Diagnosis of HS ................................................................................................................................. 42 Diagnostic algorithm for HS ................................................................................................................ 43 Differential diagnosis ............................................................................................................................. 45 Management of HS in primary care ......................................................................................... 48 Objectives of primary care in HS ........................................................................................................ 49 The nursing visit ...................................................................................................................................... 56 HS in childhood and adolescence .............................................................................................. 60 Management of HS in dermatology departments ............................................................ 64 Management of HS in a dermatology department ...................................................................... 64 The initial visit .......................................................................................................................................... 65 Successive or monitoring visits .......................................................................................................... 68 The nursing visit ...................................................................................................................................... 69 Coordination and healthcare continuity .......................................................................................... 74 The role of ultrasound ........................................................................................................................... 74 Monitoring of therapeutic response ................................................................................................. 77 Ultrasound and surgery in HS ............................................................................................................. 78 Reference centres, departments and units (RCDUs) .................................................................... 78 HS reference units? ................................................................................................................................ 79 Is there a need for a clinical guideline? ............................................................................................. 81 Emergency departments and HS ............................................................................................... 84 Care of HS in emergency departments ............................................................................................ 84 Diagnosis of HS at in-hospital and out-of-hospital emergency services ................................ 85 Management of HS in emergency departments ........................................................................... 86 2 INICIATIVA ESTRATÉGICA EN HIDRADENITIS SUPURATIVA Surgery for HS: indications, techniques and outcomes .................................................. 90 Surgical planning ................................................................................................................................... 90 Surgical options ....................................................................................................................................... 92 Basis for the assessment of the surgical outcome ......................................................................... 94 Comorbidities associated with HS: inflammatory bowel disease (IBD) ..................... 96 Prevalence of HS in patients with IBD ............................................................................................... 96 Prevalence of IBD in patients with HS ............................................................................................... 98 Diagnóstico de la HS en pacientes con EII ...................................................................................... 98 Diagnosis of IBD in patients with HS .................................................................................................. 100 Comorbidities associated with HS: psychological and social intervention ............ 104 Psychosocial impact .............................................................................................................................. 104 Psychoeducation in hidradenitis suppurativa ................................................................................. 106 Assessment of psychological impact ................................................................................................ 107 Intervention protocol ............................................................................................................................ 110 Investigation ............................................................................................................................................ 111 Dissemination .......................................................................................................................................... 112 The role of the pharmacist in the comprehensive management of HS ....................... 114 Algorithm for treatment for the patient with HS ........................................................................... 116 Empowerment of the patient with HS .............................................................................................. 118 The Figure of the active patient .......................................................................................................... 119 How to activate patients ....................................................................................................................... 120 The Figure of the expert patient ......................................................................................................... 122 Proposed interventions ............................................................................................................... 124 References ....................................................................................................................................... 132 Annex ................................................................................................................................................... 138 Annex I: Standard of care based on the lesion to be treated ........................................................................................................................................... 138 Annex II: Psychoeducation in hidradenitis suppurativa ............................................................... 139 Annex III: DLQI: Dermatology Life Quality Index (DLQI) ............................................................. 140 Annex IV: Visual analogue scale (VAS) for odour, pain and itching ........................................... 142 Annex V: Hospital Anxiety and Depression Scale (HADS) ........................................................... 143 Annex VI: Questionnaire for Psychological Distress in Hidradenitis Suppurativa (QPD-HS) 146 Annex VII: Research projects in the field of psychodermatolog ............................................... 148 3 Prologue “I spoke with a 20-year-old girl with hidradenitis suppurativa. She didn’t want to have children because she didn’t want to transmit
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