Patient experiences of Dupuytren’s contracture and its treatment

Abstract

Aims

Our aim was to investigate patient experiences of Dupuytren’s contracture and its treatment.

Methods

A purposive sample of 45 participants enrolled in the Dupuytren’s Interventions Surgery vs Collagenase (DISC) trial. Participants were interviewed three to six months after treatment. Interviews were semistructured and analyzed using an inductive, thematic approach, with data collection and analysis integrated iteratively.

Results

Participants reported living for extended periods with contracture and seeking medical advice only when they had trouble doing practical tasks or when self-conscious about their appearance. Most participants reported improvement irrespective of treatment modality. Some participants who were treated with collagenase noted that while the outcome was not perfect, it was acceptable. More participants who were treated with collagenase reported preferring collagenase in the future, compared with the proportion preferring further surgery.

Conclusion

This research contributes to our knowledge of how treatments for Dupuytren’s contracture are understood and experienced. It demonstrates that treatment experience is important to patients, and that they are often willing to accept a compromise in outcome for an easier treatment experience. Patients may be willing to accept multiple, repeated treatments. As a result, non-surgical or noninvasive treatment options, such as collagenase, are likely to be popular and could reduce delay in seeking treatment.

Cite this article: Bone Jt Open 2026;7(6):802–808.

Introduction

Dupuytren’s is a fibroproliferative disease, characterized by excessive generation of connective tissue in the hand organized into cords which shorten, causing the finger to bend.^1,2 This condition interferes with hand function and can be accompanied by emotional or psychosocial consequences.^3,4 Concerns about ageing,⁴ appearance,^3,4 interpersonal contact (in intimacy or shaking hands), and anxiety about disease progression or recurrence⁵ all demonstrate concerns beyond function alone.

Treatment for Dupuytren’s contracture includes limited fasciectomy (the most frequently used surgical method of correction in the UK and Europe),⁶ collagenase injection (an enzyme injected directly into the cord to weaken it),⁷ and percutaneous needle fasciotomy (a needle punctures or cuts the cord).⁸ The relative benefits and difficulties of these treatments are well established (i.e. in recovery time, treatment complications, and contracture recurrence).⁹ The recent Dupuytren’s Interventions: Surgery vs Collagenase (DISC) trial has demonstrated that collagenase injection is inferior to limited fasciectomy in clinical outcomes at one and two years post treatment.¹⁰

Previous assessment of treatments (although generally positive for both surgical^11,12 and non-surgical treatments)^13-15 identifies a range of factors which influence how they are judged. Appearance and function (independent of contracture reduction) have been shown to be important;^11,12 equally, complete contracture correction and low recurrence rates have been shown to be important (more so than rapid convalescence).¹⁶ The need for both practical and emotional support have been recognized.⁴

Prior treatment may influence how current treatment is experienced,¹⁷ although it has also been proposed that patient circumstances^4,16 or even personality (e.g. the eager patient vs the tolerant patient)¹⁷ shape how treatment is considered. Elsewhere, the need for good-quality information about surgery has been identified.^5,18 Detailed exploration of collagenase treatment is lacking in the literature.

This study investigates the lived experience of individuals treated for Dupuytren’s contracture within the DISC trial. It includes those treated surgically and those treated with collagenase. It seeks to generate insight about how treatments are understood and experienced; it will consider those factors and circumstances which might lead an individual to prefer one treatment over another.

Data generated will provide knowledge about the types of information that patients require when considering treatments, and about how best to communicate this. Insights into patient experiences can also support improved patient-centred care¹⁹ and shared decision-making.²⁰

Methods

This qualitative interview study was nested within the DISC trial.¹⁰ It used a reflexive approach to thematic analysis,²¹ informed by the constant comparative process,²² whereby data collection and analysis are integrated iteratively. The Yorkshire and Humber - Leeds West research ethics committee (Reference: 17/YH/0120) awarded ethics approval for this research.

Participants

Participants were selected purposively from those DISC participants who consented to taking part in an additional qualitative interview. Consent was reconfirmed prior to interview. Initial sampling focused upon ‘typical cases’ where treatment had been successful and uncomplicated (interview batch 1, n = 1 to 10 interviewees). Subsequent sampling, in batches of five, sought to include working-age participants, female participants, and to balance metacarpophalangeal (MCP) and proximal interphalangeal (PIP) joints being affected. Sampling ceased when data saturation had been achieved, i.e., no new issues were evident in the data. Saturation was established by PL and MA and confirmed with the DISC management group.

Participant characteristics

A total of 45 interviews were undertaken between April 2018 and November 2019. Participant demographic characteristics are summarized in Table I (further detail in Appendix 2).

Table I.

Summary demographic characteristics for participants.

Treatment	Sex		Joint treatment						Mean age, yrs (range)
	Male	Female	Little MCP	Little PIP	Middle MCP	Middle PIP	Ring MCP	Ring PIP
Collagenase	18	5	5	8	1	1	5	3	66 (52 to 77)
Fasciectomy	16	6	6	9	0	0	5	2	66 (53 to 81)

MCP, metacarpophalangeal; PIP, proximal interphalangeal.

Data collection

Participants were invited to take part in a single interview timed to take place between three and six months post treatment. Interviews could be face-to-face or via telephone dependent upon participant preference.

Interviews were semistructured and organized to allow participants to focus upon areas that they felt important. Four broad topic were discussed: 1) lived experience of Dupuytren’s; 2) knowledge about treatments; 3) experience of treatment; and 4) expectations for the future (see the Topic Guide in Appendix 1).

All data were digitally recorded using an encrypted device, transcribed in full, anonymized, stored on a password-protected, networked drive and handled using the NVivo v.11 (Lumivero, USA) qualitative data analysis software package.²³

Statistical analysis

Data were analyzed using an inductive, thematic approach.²⁴ Points of interest were coded with a descriptive label; these labels reviewed, refined, and organized within broader themes. Themes were reviewed for internal and external coherence; their utility in addressing the research questions considered before finalization and prioritization. Coding was led by MA and PL, with the research group reviewing and validating interpretations.

Additionally, data integration was done alongside using a constant comparative process iteratively.²² Emergent codes and insights were also shared with both public/patient groups and at clinician meetings. Through this coding was validated and finalized, and the interview topic guide was revised. Prompts about ‘pain/side-effects’ and ‘treatment trade-offs’ were added following identification as important topics in stakeholder meetings.

Results

Interviews varied in length, typically ranging between 20 and 40 minutes. Five core topics and 15 themes were identified; these are presented more fully elsewhere (see Appendix 3).¹⁰ Here, we present a selection organized to show how Dupuytren’s contracture treatments were viewed, and those factors which may influence treatment preference (see Figure 1).

Fig. 1.

Factors shaping treatment experience and future preference.

1) Understanding Dupuytren’s disease

These data demonstrate that individuals often live with contracture without seeking medical advice, and that concern about recurrence is low.

Normalized – something that can be lived with: Most participants described living with symptoms for several years prior to seeking medical advice (e.g. participant IDs: 1079, 1103, 1107, 1110, 1112, 1203, 1262, 3233, 3408). A small number described living for a decade or more without treatment: “I would say probably about 15 years,” (1151); “It’s about ten years or more, it’s just slowly happened on both of my hands” (1204).

During these periods, symptoms were presented as manageable.

“I just lived with it for a couple of years… It was more a case of a general nuisance … you seem to adapt to it somehow to a certain extent.” (1102)

Triggers to act: Consistent with the notion that individuals normalize their disease, individuals often described workarounds to practical difficulties.

“You eventually get around a problem … you seem to adapt to it somehow to a certain extent … [but] how awkward to get your hands in your jeans’ pocket.” (1262)

It was often smaller tasks that triggered seeking medical advice. Driving, gripping, writing, clapping, washing, opening doors, wearing gloves, and putting hands in pockets (among other things) were cited. Other people’s reactions might also prompt action: “I suppose I went to do something about it when people started to make comments about it.” (1102)

Disease trajectory: Most participants described an awareness of the potential for contracture recurrence but demonstrated little concern.

“It happens doesn’t it, there’s not much to do about it” (1210).

Some demonstrated a lack of knowledge - “I know there is a chance, but I don’t know what the likelihood is.” (3232)

“I know that it can happen, but I don’t really know.” (1155)

Others offered a subjective assessment of the risk: “I would think it’s unlikely.” (1263)

“I was told 20% chance” (1662); “probably about 30% [chance]” (1079)

Age was a factor for some.

“I am eighty this year, so I am not worrying about it.” (1512)

“It took 70 years for that to occur now I certainly wouldn’t be here if it occurs in another 70.” (1262)

A small number, where treatment had not been successful, showed more concern about recurrence.

“I am concerned because the pitting and the nodules are starting to move [already].” (1107)

“I think it [the chance of recurrence] will be quite high … I do [already] feel that it’s wanting to pull.” (3233)

2a) Experience of limited fasciectomy

These data offer a positive assessment of the outcome of surgery as well as the experience of the procedure and recovery.

Surgery: Participants offered few comments about the procedure, with local anaesthesia the most common focus. This was variously considered as efficient, interesting, or as the most stressful aspect. Local anaesthesia was associated with a shorter procedure.

“Having [local anaesthesia] allowed me to go in, get the op done and go home the same day.” (3177)

Complaints about surgery were most often linked to its duration.

“I wouldn’t touch the surgery. It took them 3 hours to do it.” (3782)

“I thought it might have been … it took about 2 and a half hours.” (1203)

Recovery: Perspectives of the post-surgical experience while broadly positive did show some variation, notably regarding the duration of recovery. Some saw an extended period as understandable.

“You can’t expect healing in five minutes.” (2162)

More commonly, the length of time and number of appointments were a drawback.

“The only downside to surgery is the recovery time.” (1431)

“It does drag on … it does sort of go on.” (1151)

The inconvenience of wearing a cast or splint were recognized.

“My hand in a big bandage in a boxing glove.” (1263)

“I had this sort of splint on … it restricted me, I couldn’t drive or anything.” (1079)

Treatment outcome: Most participants treated with limited fasciectomy reported improved appearance and/or functionality (16/22).

“My hand function is now 100%” (3790); “massively improved” (1152); “really pleased with how it looks” (1102)

Side-effects included increased sensitivity (1151, 1079, 3790, 3232), stiffness (1108, 3233, 1353, 3243), and numbness (3177, 3487). Pain was common, as was a concern about scar tissue.

“Painful I think is a fair description … feeling pain everyday you tend to think that it’s not doing well.” (1151)

2b) Experience of collagenase injection

These data offer a positive assessment of the treatment with most participants focusing upon the speed of procedure and immediacy of effect.

Injection and manipulation: Approximately one-third of participants (8/23) expressed surprise at how quick, easy, and simple collagenase injection had been.

“It was quick, it was simple.” (3244)

“It was over as quick as you were thinking about it.” (3487)

Pain in the procedure was commonly considered, with equal numbers suggesting that it was “painless and quick” (1103), that it was manageable “like a bee sting” (1201), or that it was “exceedingly painful” (1153). Other comments focused upon the sight and sound of a finger being manipulated, with some alarmed by the noise made when a cord is broken.

Recovery: Assessment of recovery demonstrated less inconvenience with fewer actions to take.

“[With surgery] my hand was out of commission.” (1210)

“[Rehabilitation] is much less important this time.” (1200)

“[Following surgery] I wore cycling gloves so that I had pads on the palms of my hand … I haven’t had to do that this time.” (1780)

Participants described using a splint for a few weeks to a few months, some using it all the time, some just at night, and some as when they thought about it or felt it beneficial. Just as the use of a splint was normalized, participants described exercises to stretch their fingers as becoming routine.

“I do them when I am just sitting down, not thinking about anything else or watching television I’m just doing exercises on my fingers.” (1780)

Treatment outcome: In the main, participants were satisfied with the outcome of their treatment, with 17/23 reporting an improvement in appearance and/or function. Several participants described these improvements as immediate.

“I mean you can see a vast improvement straight away.” (3487)

“I could see the results … immediately after a couple of weeks.” (1780)

Outcomes were not always seen as perfect, but they were seen to offer sufficient improvement.

“I haven’t poked myself in the eye since.” (1204)

Those with prior experience of surgical treatment were able to contextualize their satisfaction.

“It’s not perfect but I didn’t expect it to get perfect because having [previously] had the operation [and] that finger is [still] slightly bent. So, it reached if you say my expectations.” (1780)

“I say that the operation was 100% right, and the injection treatment was about 95% … 95% is still non-problematic at all for anything.” (1210)

3) Treatment assessment

These data highlight that treatments were conceived to be clinically equivalent, but that they are typified by important differences in how they are experienced.

3a) Perceived equivalence: More than one-third of those interviewed had no prior knowledge of Dupuytren’s treatments (17/45); awareness of collagenase treatment was absent; “I had no idea that injection was possible” (1110). Some speculated that surgical removal of tissue might be beneficial, but the general assessment was that surgical and non-surgical treatments offer similar outcomes.

“I think they both have the same outcome, eventually.” (1733)

3b) Push and pull: Following treatment most of those exposed to collagenase (16/23) were willing to accept a less-than-perfect outcome or an earlier recurrence due to the ease of the procedure.

“I thought that the injection treatment was safer than surgery … [it] might have been a more complete treatment by surgery but … it has gone back sufficiently for it not to be a problem.” (1110)

The convenience of the collagenase treatment meant that some were less concerned about the (increased) risk of recurrence.

“Well, if it does [recur] then it does … As I say I would certainly try to get the injections done to sort it.” (1773)

“If it does [recur], I will probably have the same treatment again … it was quick, it was simple.” (3244)

Among those exposed to surgery, nine (of 22) indicated that they were happy with a slower recovery and greater risk of complications given the improvements that they had experienced. One participant indicated that surgery had been more reassuring.

“I would think that psychologically the one that I had would last longer.” (1203)

For others, the magnitude of surgery was off-putting.

“I’ve been warned by a previous GP not to have the procedure. He said it wasn’t a serious enough condition.” (3286)

“The hand surgeon was very keen to do the open hand surgery … I said I don’t really want to have a general anaesthetic just for this.” (1107)

4) Treatment preference

These data highlight that collagenase was a popular treatment among those exposed to it, with a majority indicating that they would prefer it in the future.

Future choice: Most of those who had been treated with collagenase indicated that they would prefer it in the future (15/23). This included two participants (1103 and 1104) who had experienced early recurrence of their contracture, and some who described an imperfect treatment outcome (1204 and 1780).

Strength of feeling about fasciectomy was less evident. Where clinical outcome was satisfactory only six (of 16) indicated that they would prefer it in future. However, few expressly indicated that they would prefer a non-surgical treatment in the future, indicating that they were unsure about non-surgical options.

Discussion

Most interviewees reported improvement in contracture and function. Concerns about recurrence were few, and mainly from those describing poor outcomes. Treatment experience was presented as important, and collagenase was favoured as less intrusive and offering more immediate benefits. That collagenase might not offer a perfect correction was not problematic, nor a barrier to its repeated use.

We might infer from this that a patient-acceptable symptom state (PASS)²⁵ for Dupuytren’s might be different from a defined minimally clinically important difference threshold. Helping patients to ‘feel better’ might be more pertinent than ensuring that they ‘feel cured’. In this, we should reflect that symptoms of Dupuytren’s and the risk of contracture recurrence were often normalized.

Thus, for Dupuytren’s the subjective experience of treatment becomes almost as important as clinical outcome in shaping treatment preference.^11,12,17 That collagenase and fasciectomy were perceived to be clinically equivalent reinforces this. This simplified understanding demonstrates the need for patients’ information which describes both the risks and benefits of these treatment options.^5,18

If prior experience is important in how future treatment is considered,^14,17 then a preference for less invasive treatment should be noted irrespective of its effectiveness. Here, most participants treated with collagenase were willing to compromise clinical outcome (accepting a functional outcome) and to accept earlier contracture recurrence. Those with experience of both treatments were similarly willing to accept the collagenase trade-off. A PASS threshold for Dupuytren’s treatment which accommodates this perspective may be considered in future studies.

This insight could illuminate other aspects of Dupuytren’s management. The delay in seeking treatment described reinforces previous research and shows a need for support in seeking medical care earlier.⁴ Promoting less invasive treatments such as collagenase could address concerns about invasive treatment which might be a factor in this delay. Data generated here would suggest that any concern about less invasive treatments being less certain or long-lasting is less important to patients than previously thought.^13,16

This research is unique in offering detailed insight into the experience of a collagenase injection for Dupuytren’s contracture and in facilitating a comparison of surgical and non-surgical treatments. It adds to the field by reflecting upon how the experience of Dupuytren’s and knowledge about its progression informs help-seeking behaviour and treatment preference. It also provides knowledge that might be relevant to patient perception in other chronic recurring conditions which affect function.

Analysis is based upon 45 interviews which were carried out by a trained qualitative researcher (MA); 45 is an appropriate sample size for this type of study and is larger than most other qualitative Dupuytren’s studies. Data analysis was theoretically driven and involved both clinical and patient stakeholders.

As with most qualitative research, we acknowledge that participants were self-selected, in that they were drawn only from those DISC trial participants who were willing to be interviewed. We also acknowledge that interview timing favoured a positive assessment of collagenase treatment – in the three- to six-month post-treatment window, the benefits of a quicker recovery would have been manifest, while the difficulties of earlier recurrence were not yet experienced.

In conclusion, this research contributes to our knowledge of how treatments for Dupuytren’s contracture are understood and experienced. It demonstrates that treatment experience is important to patients, and that they are often willing to compromise (some) clinical benefit for a treatment that is shorter and which offers a quicker recovery. In this way, non-surgical options, such as collagenase injection, are likely to be popular.

The availability of less invasive treatments may mean that patients are more willing to accept multiple, repeated treatments, and that patients may delay less in seeking healthcare intervention.

Future research might seek to refine this broad assessment by looking to specific patient populations and to those experiencing PIP or MCP joint contractures to consider what additional factors might influence treatment preference. Future research might productively contribute to clinical decision-making by establishing what level of clinical improvement represents ‘good enough’? What would a Dupuytren’s contracture PASS look like, and how might it be routinely be assessed?

Take home message

- This research contributes to our understanding of how treatments for Dupuytren's contracture are understood and experienced.

- It demonstrates that treatment experience is important to patients, and that they are often willing to compromise (some) clinical benefit for a treatment that is shorter and which offers a quicker recovery.

- In this way non-surgical options, such as collagenase injection, are likely to be popular.

Data Availability

The data that support the findings for this study are available to other researchers from the corresponding author upon reasonable request.