Perspectives, perceptions, and expectations of subjects with frozen shoulder: a web-based Italian survey

Study design

This study was designed as a cross-sectional observational study and conducted as an online-based survey. Results were reported following the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) checklist (22) and the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) (23) reporting guidelines. The study protocol has been submitted and approved by the Technical Scientific Committee of the University of Molise (Italy)—Prot. n. 10/2023. All the study-related procedures were performed according to the principles of the Declaration of Helsinki (24).

Setting, sampling, and recruiting

This study enrolled Italian and Italian-speaking subjects diagnosed with FS according to Kelley’s guideline (25) criteria. Specifically, participants had painful shoulder with stable or worsening reduced external rotation with the arm by the side (<50% compared with the contralateral limb) over the past month, along with at least a 25% loss of active and passive ROM in two other planes, and negative x-ray (25). All subjects presented to the authors’ private practice for their first physiotherapy consultation for FS, with no prior treatments.

Recruitment was voluntary and conducted over a 3-month period (from April 1 to July 1, 2023)—similarly to previous studies (26,27) and other international surveys (28-30). The timeframe was deemed adequate based on prior surveys on similar topics. Participants received no incentives, and duplicate responses were prevented using a single-user authentication. Additionally, no modifications were allowed after the survey completion. All potential participants were invited to participate via a link generated by Google Form.

Informed consent

All potential participants received a link to an information letter containing details about the investigators’ identity, aim of the survey, inclusion criteria, data protection and dissemination of results, estimated time required for survey completion, and a clear informed consent statement (“If you voluntarily agree to participate in the survey, please scan this QR code or follow the link below; if not, you can close this document”). Access to the survey was granted only upon approving this consent. This method has been used in other surveys (29,30). The information letter is detailed in Appendix 1—Information Letter.

Survey development and pre-testing

The questionnaire was designed to investigate the perspectives, perceptions, expectations, needs, beliefs, and behaviors of subjects suffering from FS. Additionally, questions regarding other important priorities for FS subjects were included, for example, pain characteristics, awareness, treatment, disability, frustration due to prolonged and debilitating shoulder pain, impact on social relationships, skepticism from others, loss of independence, altered self-perception, experiences and expectations regarding healthcare providers, struggle for normalcy, and cognitive and emotional sense of uncertainty (12-14,19), as suggested by previous qualitative studies on this topic. The goal was to gather comprehensive insights that could inform better clinical management and improve outcomes for FS patients.

A draft of this cross-sectional survey was developed by six researchers—three physiotherapists and three orthopedic surgeons—specializing in shoulder diseases. Additionally, a psychotherapist was consulted to ensure the survey ability to assess psychological themes accurately. The final version of the survey, comprising 59 questions, was approved by the project lead and all team members.

Content validity was evaluated through a two-round pre-testing process. The initial round involved testing the questionnaire with four individuals who had previously experienced FS, followed by a second round with 10 subjects currently suffering from FS—in order to spot possible overlooked themes and clarify any confusing questions. Participants currently suffering from FS highlighted the need to address themes such as “unbearable pain,” “long-lasting complaints,” and “moments of discouragement.” In response, the researchers and psychologist developed specific questions (Q47, Q51, Q52) to address these concerns, which were validated by the participants and incorporated into the final survey. Consensus on the survey structure was achieved through an online meeting with all involved parties.

Final version of the survey

The final version of the survey included 2 introduction questions (email address and consent to participate), 7 demographic questions, 3 questions on current levels of day and night pain and stiffness, and 47 topic-specific questions—as detailed in Appendix 2. All questions allowed for one response only. The demographic section comprised seven multiple-choice questions on sex, geographical origin, age, education, profession, time since FS onset, and number of clinicians consulted before diagnosis (Q3 to Q9). Additionally, three questions further assessed perceived day pain, night pain, and stiffness, utilizing a Numeric Rating Scale (NRS) (Q10, Q11, and Q12).

The questionnaire used a hybrid structure, combining multiple-choice (i.e., Q13-17, 23, 52, 58, and 59) and 5-point Likert scale questions (i.e., Q18-22, 24-51, 53-57). This approach is consistent with other previously published surveys (31,32) and aimed to gather detailed data on the importance that each subject attributes to various aspects of FS—with a particular focus on exploring fear and catastrophizing tendencies, in order to assess the psychological burden associated with FS.

Specifically, the technical questions covered: eventual prior diagnosis and imaging assessment (two questions, Q13 and Q14); expectation regarding health professionals and care process (four questions, Q15 to Q18); information about FS and its effects (four questions, Q19 to Q22); beliefs on treatment (four questions, Q23 to Q26); subjects’ priorities (seven questions, Q27 to Q33); past (five questions, Q34 to Q38) and current (four questions, Q39 to Q42) mood; fear about their condition and the future (three questions, Q43 to Q45); expectation and catastrophizing thoughts related to pain, sense of self, struggle for normality (six questions, Q46 to Q51); social support, relationships, frustration, feeling of not being understood, loss of independence, skepticism from others (six questions; Q52 to Q57), and subjects’ preferences regarding treatment (two questions, Q58 and Q59).

Data analysis

Data extraction and processing were performed using Excel—with all data stored in an encrypted, password-protected file. After survey completion, the anonymized data were forwarded for blind statistical analysis to a statistician (AT). Data analysis was performed using STATA 18 SE (33), with results reported as absolute and relative (percentage) frequencies of responses.

Demographic

One-hundred and ten subjects were invited to complete the survey, and all provided their consent (100% completion rate), with no missing answers. On average, participants spent 11.22 minutes to complete the survey, as highlighted by the software.

Most participants were female (n = 72; 65.5%), aged 40 to 50 years (n = 47; 42.7%), and from northern Italy (n = 51; 46.4%). Most held a high school degree (n = 56; 50.9%) and were employed in non-physical jobs (n = 67; 60.9%).

Regarding the duration of FS, most participants had been experiencing symptoms for 5 months or longer (n = 69; 62.7%). Prior to diagnosis, most participants had consulted with one (n = 44; 40%) or two physicians (n = 30; 27.3%). Detailed demographic information is provided in Table 1 (Q3 to Q9).

Current level of day and night pain and stiffness

Participants reported a range of different day and night pain and stiffness levels. Most reported NRS pain scores between 5 and 8 during the day (n = 73; 66.4%) and between 7 and 10 at night (n = 68; 61.8%). Additionally, most rated their stiffness with an NRS score between 7 and 10 (n = 77; 70%). Detailed ratings of pain and stiffness are provided in Table 1 (Q10 to Q12).

Technical questions

Results showed that a significant number of FS patients had not undergone imaging investigations (n = 26; 23.6%). Among those who did, magnetic resonance imaging (MRI) was the most commonly prescribed, either alone (n = 24; 21.8%) or combined with x-ray (n = 17; 15.5%) (Q13). Interestingly, FS was frequently misdiagnosed as rotator cuff pathology (n = 48; 43.6%), with only 31.82% (n = 35) of cases receiving an initial correct diagnosis of FS (Q14).

Regarding interactions with physiotherapists, most participants (n = 81; 73.6%) preferred an experienced, empathetic, and caring physiotherapist (Q15). Moreover, the majority (n = 57; 51.8%) believed that physiotherapists should consider both anatomical and psychological aspects (e.g., fear, worry, anxiety, anger, lack of confidence) of FS. However, 30% of respondents (n = 33) indicated that functional outcomes should be the primary focus for physiotherapists (Q16).

Participants received several explanations about the natural history of FS from their clinicians. Some described three phases (freezing, frozen, and thawing) (n = 32; 29.1%), while others referred to two phases (pain predominant and stiffness predominant) (n = 17; 15.5%), and some did not specify any phases (n = 23; 20.9%) (Q17).

Most participants felt adequately informed (“disagree” = 37.3%; n = 41) (Q18) and supported (“disagree” = 36.4%; n = 40) in managing FS (Q19). They also reported reduced anxiety and concerns about recovery failure due to the information provided (“disagree” = 29.1%; n = 32) (Q20).

Respondents agreed that clinicians provided helpful and reassuring information to manage discouragement (“agree” = 35.5%; n = 39) (Q21)—which contributed to increased encouragement and reduced kinesiophobia (“agree” = 43.6%; n = 48) (Q22).

While most participants primarily relied on physiotherapists for FS management (n = 54; 49.1%), they were also open to collaborative approach involving physicians, algologists, and psychologists when necessary (n = 50; 45.5%) (Q23).

Most participants believed that their efforts in physiotherapy would lead to complete recovery (“agree” = 40.4%; n = 44) (Q24), rather than just partial improvement (n = 28; 25.5%) (Q26) and found treatments to be beneficial (n = 42; 38.2%) (Q25).

Most participants identified several goals as “very important” (Q27-Q33): specifically, night pain (n = 79; 71.9%), full ROM restoration (n = 78; 71%), improvement of sleep quality (n = 66; 60%), autonomy in activities of daily living (n = 65; 59.1%), participation in social and leisure activities (n = 61; 55.5%), and daytime pain (n = 53; 48.2%). Lastly, reassurance from the physiotherapist (n = 49; 44.6%) was also considered “important.”

Regarding the emotional impact of FS (Q34-Q38), many respondents stated they felt “a lot” angry (n = 33; 30%), sad or overwhelmed (n = 33; 30%), experiencing a blue or low mood (n = 34; n = 30.1%), and feeling powerless (n = 29; 26.4%). However, most respondents considered themselves to be reactive (n = 45; 40.9%).

Before FS onset (Q39-Q42), most respondents reported that they “rarely” felt angry (n = 43; 39.1%), sad or overwhelmed (n = 36; 32.7%), blue or experienced low mood (n = 33; 30%), or felt powerless (n = 51; 46.4%).

The survey also investigated respondents’ fear (Q43-Q45). Most subjects with FS did not fear worsening their condition through shoulder movement (“disagree” = 42.7%; n = 47), or believe that FS will irreversibly damage their shoulder (“disagree” = 30%; n = 33). However, many were concerned they might never return to their previous activities (“agree” = 37.3%; n = 41).

Regarding catastrophizing (Q46-Q51), most respondents “often” thought that they would never regain full arm elevation (n = 43; 39.1%), that the pain was unbearable, that they felt trapped in a never-ending situation (n = 40; 36.4%), and that they were worried about the prolonged duration of their condition (n = 41; 37.3%).

Most respondents “sometimes” felt that all their efforts for healing were useless (n = 38; 34.6%), that they were overwhelmed by the situation (n = 38; 34.6%); however, they “never” thought that FS had ruined their lives (n = 49; 44.6%).

Six questions investigated social support, with most respondents reporting that they sought advice from a clinician who was ready to listen to them (n = 42; 38.2%) when they felt discouraged due to FS (Q52). A total of 41.8% (n = 46) felt that those around them had “little” understanding of the seriousness of their condition and provided inadequate support (Q53). In particular, 35 (31.8%) respondents were unsure whether people fully supported and understood their condition (Q54); however, most patients felt somewhat supported (n = 39; 35.5%) (Q57), although not as much as they would have hoped (n = 39; 35.5%) (Q55). Consistent with previous questions, 30.9% (n = 34) felt that others did not truly understand their situation (Q56).

To improve therapy adherence, participants preferred being filmed with a phone and receiving text messages for home exercises (47.3%, n = 52) (Q58). Most were also open to cortisone treatment (oral or injection) (27.3%, n = 30) or electrophysical agents (25.5%, n = 28) for managing the painful phase of FS (Q59).

Limitation of this study

This survey represents one of the most extensive studies providing valuable insights into the psychological and social dimensions experienced by subjects suffering from FS—highlighting the need for a comprehensive, patient-centered approach, as recommended in prior studies (18).

However, there are limitations. Self-reported data may be affected by participants’ current emotional states, potentially leading to inaccuracies. While efforts were made to ensure content validity through literature review, expert consultation, and pilot testing, this survey’s psychometric properties were not extensively validated. Additionally, participants’ perspectives and needs may evolve over time. Social desirability bias may influence responses, especially regarding interactions with healthcare professionals. Additionally, the sample may not fully represent the Italian population, as participants were recruited from specific areas of Italy and from a single private physiotherapy practice, limiting the generalizability of the findings.

Implications for clinical practice

This survey highlights areas for improvement in physiotherapy practice. In terms of diagnosis, clinicians should carefully consider clinical presentation and disease progression, along with appropriate use of imaging, to reduce misdiagnosis of FS. Additionally, physiotherapists should enhance their therapeutic skills, as well as their abilities in communication, empathy, and patient care, as patients expect clinicians to be engaged and empathetic. Moreover, establishing a strong therapeutic relationship that aligns with patients’ preferences is a key element of patient-centered care and has been positively linked to better clinical outcomes in physiotherapy (46). Notably, patients experience significant mood changes before and after FS—including increased feelings of anger, sadness, and low mood. Patients also emphasize the importance of feeling heard and reassured when expressing their fears. In light of these emotional changes and specific needs, adopting a biopsychosocial approach to patient care is essential. Additionally, catastrophizing thoughts and a lack of social support were noted—aligning with findings from previous studies (12-14,18,19). Physiotherapists should therefore be prepared to address these factors, as psychological interventions led by physiotherapists have shown promise in improving health outcomes (47). However, this approach may require additional training or collaboration within multidisciplinary teams to ensure the most effective and comprehensive care.

Clinicians should incorporate a holistic assessment of all patient domains from the initial evaluation and monitor these aspects consistently throughout rehabilitation, moving beyond the traditional biomechanical focus. From the patients’ perspective, treatment priorities emphasize the need for physiotherapists to focus on relieving night pain and improving ROM, to better align with patient goals and increase satisfaction (41).

Future research

Given that this study included only Italian-speaking participants, future research should consider administering the survey in multiple languages to capture cultural nuances that might affect responses. While this study offers a snapshot of the participants’ experiences, a longitudinal design would provide insights into how challenges and perceptions evolve over time. Such surveys could also help tailor rehabilitation approaches at the beginning and throughout therapy.

Incorporating more robust and validated measures could further enhance the reliability of the findings. Addressing these considerations in future research will deepen our understanding of FS and improve care and outcomes for affected individuals.