Evaluation of National Highly Specialized Care for Adults With Treatment-Resistant Self-Harm and Eating Disorders: Substudy 1

Patients' and significant others' perceptions of treatment credibility and expectations regarding treatment outcomes are assessed using the 6-item Credibility/Expectancy Questionnaire (CEQ). The questionnaire consists of two subscales: treatment credibility (3 items) and treatment expectancy (3 items). Scores for each subscale range from 3 to 27, with higher scores indicating greater perceived treatment credibility and higher expectations of treatment-related improvement, respectively.

Treatment satisfaction is assessed using the Treatment Satisfaction Scale, Version 2 (TSS-2) (with patients and significant others). The questionnaire consists of six items assessing satisfaction with the treatment received. Five items are scored from 0 to 3 and one item from 0 to 4, yielding a total score ranging from 0 to 19. Higher scores indicate greater treatment satisfaction.

Patients' and significant others' perceived acceptability of National Highly Specialized Care (NHV) is assessed using a Visual Analogue Scale (VAS) ranging from 0 to 10, with higher scores indicating greater treatment acceptability. The measure is administered to patients receiving NHV for severe self-harm or eating disorders and their significant others.

Self-harm behaviors are assessed using a modified 9-item version of the Deliberate Self-Harm Inventory (DSHI-9), in which two items from the original questionnaire (items 1 and 2) have been combined into one to reduce respondent burden. The questionnaire is administered to patients receiving NHV for severe self-harm or eating disorders. The frequency of self-harm behaviors during the preceding three months is assessed, and changes are evaluated over time, with higher scores indicating more frequent self-harm. Two additional items assessing deliberate foreign body ingestion (DFBI) and intentional overdose are evaluated separately.

Eating disorder psychopathology is assessed using the Eating Disorder Examination Questionnaire (EDE-Q) in patients receiving NHV for eating disorders. The EDE-Q assesses eating disorder attitudes and behaviors during the preceding 28 days. The global score ranges from 0 to 6, with higher scores indicating more severe eating disorder psychopathology.

Body Mass Index (BMI), calculated as weight in kilograms divided by height in meters squared (kg/m²), is assessed in patients receiving NHV for eating disorders. Changes in BMI are evaluated over time using clinical measurements and medical records.

Depressive symptoms are assessed using the 9-item self-report version of the Montgomery-Åsberg Depression Rating Scale (MADRS-S) in patients receiving NHV for severe self-harm or eating disorders. Each item is scored from 0 to 6, yielding a total score ranging from 0 to 54, with higher scores indicating greater severity of depressive symptoms.

Eating disorder-related functional impairment is assessed using the 16-item Clinical Impairment Assessment (CIA) in patients receiving NHV for eating disorders. Total scores range from 0 to 48, with higher scores indicating greater impairment associated with eating disorder symptoms.

General functioning and disability are assessed using the 12-item World Health Organization Disability Assessment Schedule 2.0 (WHODAS-12) in both patient groups. Using simple summed scoring, total scores range from 12 to 60, with higher scores indicating greater functional impairment.

Subjective quality of life is assessed using the 12-item Brunnsviken Brief Quality of Life Scale (BBQ) in patients receiving NHV for severe self-harm. The scale assesses satisfaction with important life domains, weighted by their perceived importance. Total scores range from 0 to 96, with higher scores indicating better perceived quality of life.

Perceived social support is assessed using the 12-item Multidimensional Scale of Perceived Social Support (MSPSS) in both patient groups. The questionnaire assesses perceived support from family, friends, and significant others. Mean scores range from 1 to 7, with higher scores indicating greater perceived social support.

Difficulties in emotion regulation are assessed using the 16-item Difficulties in Emotion Regulation Scale (DERS-16) in patients (and significant others) receiving NHV for severe self-harm or eating disorders. Total scores range from 16 to 80, with higher scores indicating greater difficulties in emotion regulation.

Social safeness and positive experiences in social relationships are assessed using the 11-item Social Safeness and Pleasure Scale (SSPS) in both patient groups. Higher scores indicate greater feelings of social safeness, connectedness, and pleasure in social relationships.

Perceived emotional invalidation is assessed using the Perceived Invalidation of Emotion Scale (PIES) in the self-harm-group (and significant others). The questionnaire assesses the extent to which individuals perceive that their emotions are misunderstood, dismissed, or invalidated by others. Higher scores indicate greater perceived emotional invalidation.

Self-harm behaviors are assessed using the 26-item Five Self-Harm Behaviour Groupings Measure (5S-HM) in patients receiving NHV for severe self-harm. The instrument assesses five categories of behaviors: (1) direct physical self-injury, (2) neglect of physical needs, (3) sexual self-harm, (4) deliberate risk-taking and self-endangerment, and (5) suicide attempts. Each item assesses the frequency of behaviors during the preceding three months on a scale from 0 (never) to 8 (eight or more times). Mean scores are calculated separately for each of the five behavioral categories, with higher scores indicating more frequent behaviors. An overall total score is also calculated across all 26 items.

Pain experience and sensitivity are assessed using selected items from the PrePain questionnaire (Gedin et al., 2025), supplemented with five study-specific items addressing pain associated with self-harm, in patients receiving NHV for severe self-harm. The PrePain items assess current pain and pain intensity across body regions (1-10), history and presence of long-term pain (four yes/no items), and perceived pain sensitivity (1-10). The additional items assess pain intensity, pain tolerance, positive experiences associated with pain, persistence of pain following self-harm (each rated from 1 to 10), and perceived differences in pain between self-injury involving skin damage and deliberate ingestion of harmful foreign objects. All items are evaluated separately, and no overall total score is calculated.

Self-harm behaviors are assessed using a modified 9-item version of the Deliberate Self-Harm Inventory (DSHI-9), in which two items from the original questionnaire (items 1 and 2) have been combined into one to reduce respondent burden. The questionnaire is administered to patients receiving NHV for severe self-harm or eating disorders. The frequency of self-harm behaviors during the preceding 7 days is assessed, and changes are evaluated over time, with higher scores indicating more frequent self-harm. Two additional items assessing deliberate foreign body ingestion (DFBI) and intentional overdose are evaluated separately.

Eating disorder symptoms are assessed using the 8-item Eating Disorder Symptom List (EDSL) in patients receiving NHV for eating disorders or severe self-harm. The questionnaire assesses the frequency of eating disorder symptoms during the preceding seven days, with each item scored from 0 (no days) to 7 (every day). Total scores range from 0 to 56, with higher scores indicating more frequent eating disorder symptoms. Two additional items have been included to assess the total number of binge-eating episodes and purging episodes during the preceding seven days. These two items are evaluated separately and are not included in the total score.

Significant others' perceptions of patients receiving NHV for severe self-harm or eating disorders are assessed using four study-specific Visual Analogue Scales (VAS). The scales assess (1) the severity of the patient's mental health-related difficulties, (2) the patient's ability to cope with psychological distress, (3) the patient's quality of life, and (4) the patient's ability to function in daily life, including household activities, work, studies, parenting, social relationships, and leisure activities. Each dimension is rated separately on a scale from 0 to 10. Higher scores indicate greater perceived difficulties on the first scale and better coping skills, quality of life, and daily functioning on the remaining three scales. Daily functioning is assessed with reference to the preceding 30 days. No overall total score is calculated.