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Background: Value-based healthcare emphasizes outcomes that matter to patients, and patient-centred outcomes sets are vital to its success. For psoriasis, initial work proposed a patient-centred outcomes set in Belgium, but it requires further validation to ensure international applicability.

Objective: This scoping study aimed to refine the outcomes set in collaboration with patient representatives and dermatologists, in preparation for international validation through a Delphi consensus process.

Methods: An international Working Group of patient representatives and dermatologists was established through the International Federation for Psoriasis Associations (IFPA) and the International Psoriasis Council (IPC). Experts participated in three discussion meetings and subsequent surveys to discuss and recommend outcomes important to people living with psoriasis, their measurement and case-mix variables. The systematic review of patient-relevant outcomes was updated as well and outcome measurement instruments were selected corresponding to the COSMIN criteria.

Results: The Working Group included 35 experts (12 patient representatives and 23 dermatologists) from 22 countries. A total of three discussion meetings and two subsequent surveys informed the refinement of the outcomes set. ‘Acceptable costs of care for society’ was excluded as an outcome, four outcomes were merged into ‘psoriasis clearance’ and ‘social activity’, and ‘communication’ and ‘confidence in care’ were reclassified as patient experiences. ‘Feelings of stigmatization’ and ‘number of flare-ups’ were added based on patient recommendations. These changes resulted in a revised set of 18 patient-relevant outcomes and 2 patient experiences. After selecting outcome measurement instruments, a heatmap was compiled to assess overlap, quality and feasibility. Finally, 50 case-mix variables were proposed based on the literature and expert opinions.

Conclusion: This scoping study convened an international Working Group of patient representatives and dermatologists to establish the fundamentals for a patient-centred outcomes set. The subsequent Delphi process will finalize consensus, advancing value-based psoriasis management worldwide.

Purpose: Patient-reported experience measures represent the patient’s voice and offer a way to evaluate continuity of care. We investigated the impact of having an assigned care provider on experienced involvement, information, and emotional support.

Methods: Data from a national survey sent to patients recently diagnosed with cancer. Answers were grouped and compared using Pearson’s chi-square test.

Results: A total of 89.1% of respondents reported having an assigned care provider. These individuals reported higher levels of involvement, information, and emotional support compared to individuals who did not have an assigned care provider. The profession of the care provider had little impact.

Conclusion: An assigned care provider is important for maintaining continuity of care. This should be encouraged in cancer care as it leads to better patient experience across all investigated domains. The widely spread use of contact nurses in cancer care in Sweden provides a solid ground for such continuity. The continuous use of patient-reported experience measures promotes more people-centered healthcare practices.

Hard-to-heal arterial leg ulcers in older adults are a challenging and complex condition. In this quasi-experimental study, three treatment approaches were compared. The purpose was to investigate (1) the healing time of arterial leg ulcers in older adults (≥ 70 years) who underwent photobiomodulation, revascularisation, or conservative treatment; (2) the importance of factors associated with impaired healing; and (3) ulcer recurrence after healing with photobiomodulation. Participants who received photobiomodulation (n = 51) were frail older adults recruited from municipal home healthcare and matched with participants who received revascularisation (n = 71) or conservative treatment (n = 153). The latter two groups were retrieved from the Swedish Quality Registry RiksSår for ulcer treatment. Photobiomodulation was performed at wavelengths of 635 and 904 nm twice weekly. The results showed that the photobiomodulation group had a significantly shorter healing time (p < 0.001) and a higher proportion of healed ulcers; photobiomodulation 66.7%, revascularized 50.7% and conservatively treated group 41.2%. The median healing times for the photobiomodulation group were 135 days (confidence interval 95–175), compared to 252 (confidence interval 181–323) and 316 (confidence interval 192–440) in revascularized and conservatively treated groups, respectively. Neither ulcer duration nor other pretreatment factors exerted clinically relevant effects on healing time. In this study, recurrence within 24 months of healing with photobiomodulation was < 12%. In conclusion, photobiomodulation has the potential to heal hard-to-heal arterial ulcers markedly faster than revascularisation or conservative treatment. It could be a suitable treatment alternative for frail older adults, including those with previous substantial ulcer duration.

Background: Real-world data on health-related quality of life (HRQoL) in generalized pustular psoriasis (GPP) are scarce and studies have been restricted in terms of instruments used for assessments.

Objective: To assess generic and dermatology-specific HRQoL of patients with GPP compared with patients with plaque psoriasis using real-world data from the Swedish National Register for Systemic Treatment of Psoriasis.

Methods: Cross-sectional data from 2006 to 2021 including 7041 individuals with plaque psoriasis without GPP and 80 patients with GPP, of which 19% also had plaque psoriasis. Total scores for the EuroQol-5 Dimensions (EQ-5D) and Dermatology Life Quality Index (DLQI), as well as degree of severity within the instruments’ dimensions/questions, were compared between patient groups.

Results: EQ-5D scores were significantly (p < .01) lower (worse) in patients with GPP (mean [standard deviation (SD)] 0.613 [0.346]) vs. patients with plaque psoriasis (mean [SD] 0.715 [0.274]), indicating lower generic HRQoL of patients with GPP. Significantly (p < .01) higher (worse) total DLQI scores were observed for patients with GPP (mean [SD] 10.6 [8.9]) compared with patients with plaque psoriasis (mean [SD] 7.7 [7.1]), with proportionally more patients with GPP having severe (20% vs. 16%) and very severe (17% vs. 8%) problems. The worsened scores for GPP vs. plaque psoriasis were consistent across EQ-5D dimensions and DLQI questions.

Conclusions: Individuals with GPP have a considerable impairment in both generic and dermatology-specific HRQoL. The HRQoL was significantly worse in individuals with GPP compared to individuals with plaque psoriasis. The significant HRQoL impairment of GPP shows the potential value of better healthcare interventions for this multisystem disease.

Background: Real-world data on health-related quality of life (HRQoL) in palmoplantar pustulosis (PPP) are scarce and few studies have analysed the generic HRQoL.

Objectives: To assess HRQoL using the generic EQ-5D instrument and the Dermatology Life Quality Index (DLQI) instrument in PPP compared to plaque psoriasis.

Methods: Cross-sectional data from PsoReg, the Swedish National Registry for Systemic Treatment of Psoriasis (2006–2021), were examined. The study included 306 patients with PPP, out of which 22% had concomitant plaque psoriasis (n = 68), and 7041 patients with plaque psoriasis only. EQ-5D and DLQI were compared between patients with PPP and patients with plaque psoriasis, overall and stratified by sex. A subgroup analysis compared outcomes for patients with PPP vs. patients with severe plaque psoriasis (Psoriasis Area and Severity Index ≥10). Multiple regression analyses were performed to control for potential confounders (age, sex, comorbidities, lifestyle factors).

Results: Patients with PPP were to a larger extent female (79% vs. 37%, p < .01) and older (mean [SD] age 59.9 [11.9] vs. 50.7 [16.0] years, p < .01) than patients with plaque psoriasis. EQ-5D values were significantly lower (worse) in patients with PPP (mean [SD] 0.622 [0.309]) compared to patients with plaque psoriasis (mean [SD] 0.715 [0.274]). No significant difference was observed compared to patients with severe plaque psoriasis (p = .237). DLQI was comparable in PPP and plaque psoriasis patients (p = .117). In the regression analyses, PPP only and PPP with plaque psoriasis were associated with lower EQ-5D values of 0.065 (p < .01) and 0.061 points (p < .10) compared to plaque psoriasis patients.

Conclusions: PPP had a substantial negative impact on patients’ generic and dermatology-specific HRQoL. Patients with PPP were worse off in terms of generic HRQoL compared with patients with plaque psoriasis when controlling for the impact of potential confounders.

The aim of this study was to estimate the economic burden of palmoplantar pustulosis, a chronic relapsing skin condition commonly occurring in combination with psoriasis vulgaris. Using data from the Swedish National Patient Register and Swedish Prescribed Drug Register for 2015, the study estimated all-cause and palmoplantar pustulosis-specific healthcare resource use (inpatient stays, physician visits and drug use) for 14,715 patients with palmoplantar pustulosis, and compared these both with matched controls from the general population and with patients with psoriasis vulgaris (without palmoplantar pustulosis). Mean annual direct costs for a patient with palmoplantar pustulosis was higher compared with costs for the general population (3,000 vs 1,700 Euro, p < 0.001). Compared with psoriasis vulgaris, more patients with palmoplantar pustulosis had inpatient stays, but fewer had physician visits and psoriasis-related drugs; the overall costs were similar. Only a small fraction of the costs of physician visits and inpatient stays for patients with palmoplantar pustulosis were attributable to specific palmoplantar pustulosis problems, indicating a clear comorbidity burden in palmoplantar pustulosis.

Background: Patient reported experiences in individuals being investigated for cancer have been recorded in a nationwide survey in Sweden, providing an opportunity to assess the impact of the Covid-19-pandemic.

Material and Methods: Questionnaires from 45920 patients were analyzed to assess the experience of being investigated for cancer. Data from before the Covid-19-pandemic (2018–2019) was compared to data acquired during the pandemic (2020–2021), using chi-square and Wilcoxon rank sum tests. Both, patients who were cleared from suspicion of cancer and those who were diagnosed with cancer were included.

Results: Fewer patients in total visited health services during the pandemic. However, patients that did seek help did so to a similar extent during as prior to the pandemic. Patient waiting time was perceived to be shorter during the pandemic and judged as neither too long nor too short by most patients. The emotional support to patients improved during the pandemic, whereas the support to next of kin declined. A majority of patients received the results from the investigation in a meeting with the physician. Although there was a preference for receiving results in a meeting with the physician, the pandemic has brought an increasing interest in receiving results by phone.

Conclusion: Swedish cancer healthcare has shown resilience during the Covid-19-pandemic, maintaining high patient satisfaction while working under conditions of extraordinary pressure. Patients became more open to alternatives to physical “in person” health care visits which could lead to more digital visits in the future. However, support to significant others demands special attention.