In the spring of 2026, research agency ZorgfocuZ conducted a study commissioned by the Power of Reflection Foundation and facilitated by a grant from ZonMw, a quantitative needs assessment was conducted. The results of this quick scan provide numerical insights into the experiences and priorities of the target group. The collected data show the challenges patients experience within the current healthcare landscape and how the vision and mission —STRONG for CONNECTIVE TISSUE— of the Power of Reflection Foundation relate to these findings.
The foundation aims to be a connecting, representative voice and to offer an accessible platform for its constituency. The outcomes of this study provide a clear, data-driven direction to work step-by-step on information provision and public awareness, based on available volunteer capacity.
Insights from the study: Experiences in healthcare
The results from the quick scan map out the experiences within the current healthcare structure:
- Experience with the care received: One-third of the respondents (33%) are neutral regarding the care they receive. The proportion of respondents who are dissatisfied (28%) or very dissatisfied (9%) is cumulatively higher than the group that is satisfied (22%) of zeer tevreden (9%).
- Sense of recognition: Regarding the extent to which patients feel taken seriously by healthcare providers, 26% experience this as 'not really' and 12% as 'not at all'. This signal is more prevalent within the age group up to 45 years, where 49% indicate they do not feel taken seriously (at all).
- Explanation from respondents: As reasons for a neutral or dissatisfied rating, respondents mention, among other things, a need for more specific knowledge about collagen connective tissue disorders among general healthcare providers, more understanding of the impact of the symptoms, and greater mutual coherence within healthcare.
The background of these experiences is partly characterized by the prevalence of physical symptoms within the study population: 95% of the respondents report daily pain and 92% experience chronic fatigue.
📋 Data Overview Needs Assessment 2026
| Investigated dimension | Statistical outcomes from the Quick Scan¹ |
|---|---|
| Experience with care (n=82) | 33% Neutral28% Dissatisfied22% Satisfied9% Very dissatisfied9% Very satisfied |
| Sense of recognition (n=80) | 32% Reasonably taken seriously26% Not really taken seriousl16% Neutral12% Not at all taken seriously12% Very seriously taken |
| Patient needs² (n=82) | 57% More awareness and societal understanding52% Reliable medical information44% Updates on scientific research38% Practical tips20% Advocacy / collective voice |
| Preferred form of activities (n=52) | 58% Preference for a hybrid format (online and on-site)21% Preference for fully online participation19% Preference for physical on-site participation2% Preference for another format |
¹ Source: ZorgfocuZ (2026). Total percentages per dimension may cumulatively add up to 98% or 101% due to software rounding in the source report.
² This dimension involved a multiple-choice question (maximum of 3 answers); the percentages show the proportion of the total study population that selected the specific option, causing the sum of all available answer options to exceed 100%.
Support needs of the target group
Respondents were directly asked about the areas in which they currently have the greatest need for support (with a maximum of three options allowed). The top three most frequently selected needs are:
- Public awareness: A need for better awareness and understanding of collagen connective tissue disorders in society (57%).
- Reliable information: A need for reliable medical information regarding the conditions (52%).
- Scientific updates: A need for information on ongoing research and new developments (44%).
Furthermore, the study indicates a willingness for active involvement within the constituency: among the respondents considering contributing as a volunteer, 42% express a desire to provide support in approaching healthcare professionals, organizations, or collaboration partners.
Achievable next steps of the foundation
STRONG for CONNECTIVE TISSUE of Power of Reflection Foundation is fully supported by voluntary efforts alongside personal responsibilities, regular jobs, and side activities. Therefore, the recommendations from the report are translated into clear, step-by-step projects:
- Information provision through online channels: Social media (especially Facebook) plays an important role in communication within the target group (97% of social media users use this platform). Based on available time, the foundation will share useful research updates and practical tips through these channels.
- Supporting conversations: In response to the need for more awareness among practitioners, the foundation focuses on collecting compact information that patients themselves can use to support the conversation with their doctor.
- Low-threshold, hybrid meetings: Limited energy or physical strain forms a barrier to participating in activities for 63% of the respondents. Since 58% prefer a hybrid format (both online and on-site), the foundation aims to offer meetings and information sessions in this format.
Het onafhankelijke rapport van ZorgfocuZ concludeert dat Stronger for Connective Tissue. van Power of Reflection Foundation een duidelijke meerwaarde kan leveren als kennisplatform, belangenbehartiger en verbindende organisatie. De verkregen subsidie van ZonMw biedt een stabiele basis en kompas om dit vorm te geven.
We prefer to realize progress and greater awareness through constructive dialogue and cooperation between patients, loved ones, and healthcare providers. Would you like to contribute to a specific project or an online campaign entirely without obligation, based on your own available time and energy? Your ideas and support are welcome to work step-by-step towards more recognition and better support. Feel free to contact us. Together we stand STRONG for CONNECTIVE TISSUE.