Aline Hakbijl van der Wind

Spinal cord injury (SCI) is a neurological condition causing partial or complete loss of motor, sensory, and autonomic functions, affecting daily and social life. Individuals with SCI must adapt to a new way of living. While many achieve a positive quality of life (QoL), some develop psychological conditions such as depressive or anxious symptoms. The International Classification of Functioning, Disability and Health (ICF) provides a framework for understanding these differences between persons by linking impairments, activities, and participation with personal and environmental factors that influence individual outcomes.

QoL reflects an individual’s overall perception of life, including physical health, mental well-being, and social support. The SCI QoL-Basic Dataset (SCI QoL-BDS) is a brief questionnaire consisting and was developed to standardize measurement and facilitate international comparison and data sharing. QoL is influenced by demographic, injury-related, and psychological factors (such as self-efficacy and purpose in life), which can be targeted during rehabilitation to support adaptation to the individual’s new situation.

The goal of rehabilitation is to create an environment that supports optimal recovery by addressing health conditions, body functions, activities, participation, and personal and environmental factors to improve QoL. All members of the rehabilitation team contribute to psychological support, making collaboration essential for enhancing QoL. Interventions that promote independence, self-care, and social participation indirectly improve QoL, as many rehabilitation activities, even those not explicitly aimed at QoL, foster a person’s sense of mastery and autonomy, which are key components of overall well-being.

Chapter 1 provides an overview of the content of this thesis, covering the consequences of SCI, its impact on QoL, the use of the SCI QoL-BDS to measure QoL, and the role of psychological factors in managing the consequences of SCI.

Part 1: Measuring what matters: QoL in SCI
Chapter 2 reports on an international mixed-methods study conducted across five sites in four countries (the United States, Australia, Brazil, and the Netherlands). Using cognitive interviews with 51 people with SCI, the study examined whether the concept of QoL—and the three items of the SCI QoL-BDS—are understood in a comparable way across cultures. Despite some contextual nuances, participants across all sites described QoL using similar language and responded to the SCI QoL-BDS items in consistent ways. The high degree of overlap in how individuals defined QoL and interpreted the items indicates strong conceptual and item equivalence.

Chapter 3 deepens the understanding of the social domain of QoL by reanalyzing a subset of the interview data using the ICF classification. This approach examined which aspects of social life are most important to QoL from the perspective of 39 individuals living at least one year post-SCI. Text fragments were linked to ICF categories related to community, social, and civic life (ICF chapters d6–d9). The analysis showed that social life is a central component of QoL. Participants frequently referred to family relationships, intimate partnerships, and participation in recreation and leisure as essential to living well after SCI. Social themes also appeared when discussing physical and psychological health, illustrating how social aspects are intertwined with all domains of life. Other relevant topics included formal social roles, financial independence, and the ability to engage meaningfully with one’s community. These results confirmed that social life plays a central role in how individuals evaluate their QoL and supported the addition of a fourth item on satisfaction with social and civic life to the SCI QoL-BDS, which originally included three items on satisfaction with life as a whole, physical health, and psychological health.

Part 1 demonstrates that the SCI QoL-BDS is both cross-culturally valid and conceptually enriched by the explicit inclusion of social life. This strengthens its value for international research, data comparison, and clinical assessment, ensuring that QoL is measured in a way that reflects what truly matters to individuals living with SCI.

Part 2: The mind’s role: Psychological factors in QoL
Chapter 4 presents an update of a previous systematic review on the relationship between psychological factors and QoL in people with SCI. A total of 66 studies published between 2010 and 2023 were identified that examined the association between psychological factors and QoL after SCI. Since the previous review in 2010, evidence has become stronger for consistent associations with personality characteristics, resilience and who individuals hold responsible for the occurrence of the SCI (attribution of blame) with both QoL and mental health. Clear associations were also found for perceived control over one’s situation (locus of control), sense of coherence, positive emotions (positive affect), hope, purpose in life, self-worth, emotion-focused coping, and how people think about their situation (cognitive appraisals). Evidence remained limited for negative emotions (negative affect), spirituality, other coping styles, and post-traumatic growth. The review highlights the need for more longitudinal research, clearer terminology, and better reporting standards.

Chapter 5 describes a longitudinal cohort study of 266 individuals with a recent spinal cord injury, who were followed over time from admission to the rehabilitation center up to four years after discharge. At admission, a selection of psychological factors were assessed, while QoL was measured at nine time points during inpatient rehabilitation and up to four years post-discharge. Life satisfaction steadily increased over time, with the largest improvements occurring during the first four weeks of rehabilitation and between one and four years after discharge. In longitudinal multilevel models, younger age, Dutch nationality, higher education level, higher confidence in managing one’s SCI (disabilitymanagement self-efficacy), and perceive the SCI as less threatening (threatening appraisals) predicted a more positive course of life satisfaction. Strengthening self-efficacy and reducing threatening appraisals during inpatient rehabilitation may support better adjustment and enhance long-term life satisfaction.

Part 2 shows that psychological resources, self-efficacy and threatening appraisals play a meaningful role in QoL outcomes after SCI. They underline the importance of addressing self-efficacy and threatening appraisals early in rehabilitation to support long-term QoL.

In Chapter 6, we described and discussed the main findings of this thesis. We elaborated on the fourth item added to the SCI QoL-BDS, examining its use both internationally and nationally, as well as the internal consistency of the measure. We reflected on the qualitative design of the study, the generalizability of findings, and the absence of ‘spiritual connectedness’ in the results of Part 1. Regarding the second part of the thesis, we discussed the choice of measurements and the potential influence of the rehabilitation process on the increase in QoL during the first month. We also examined the interplay between physical and psychological processes, emphasizing that addressing both is key for successful rehabilitation.

A key focus of this chapter is the clinical implications for the multidisciplinary team, particularly nurses. Adding the fourth SCI QoL-BDS item to standard screening helps identify psychosocial needs early, allowing interventions to begin at the start of rehabilitation. The team fosters trust, support, and motivation, which enhance self-efficacy, reduce threatening appraisals, and help individuals manage challenges after SCI. Nurses play a central role through daily interactions with individuals and their social networks, gaining insight into personal and contextual factors. This enables them to identify psychosocial challenges and act as a vital link within the team.

Finally, further research should continue to examine the cross-cultural equivalence of the fourth item added to the SCI QoL-BDS. Longitudinal studies are needed to better understand QoL trajectories, the influence of rehabilitation, and interventions that enhance self-efficacy and reduce threatening appraisals. The role of nurses in supporting these psychological factors also warrants further exploration.